Newborn Screening: Current Landscape and Future Directions

Webcast

Newborn Screening: Current Landscape and Future Directions: Report Release Webinar

May 1, 2025

11:00 AM - 12:00 PM (ET)

Past

About

The National Academies report "Newborn Screening in the United States: A Vision for Sustaining and Advancing Excellence" will be released to the public on May 1, 2025.

For over 60 years, public health newborn screening programs have served families in the United States by identifying babies at risk of serious but treatable conditions and connecting them to clinical care. Today, more than 98% of infants receive dried blood spot screening, which entails collecting a few drops of blood during the first days of life, applying them to a paper card, and sending the card to a lab to be tested for markers of specific health conditions. The public health impacts of newborn screening are vast, with over 7,000 infants identified annually for timely interventions. Despite these achievements, challenges in implementing newborn screening programs persist.

In response to a congressional request, the Office on Women’s Health of the U.S. Department of Health and Human Services (HHS) asked the National Academies to convene an ad hoc committee of subject matter experts to examine the current landscape of newborn screening in the United States, recommend options to strengthen this public health service, and establish a vision for the future. Supplementary funding was provided by the Chan Zuckerberg Initiative to enable additional public engagement. The resulting report provides actionable recommendations for navigating the path ahead while preserving and enhancing what is already considered a valuable and effective public health achievement.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Emily Packard Dawson

epdawson@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Webinar

Newborn Screening: Current Landscape and Future Directions Webinar on Family Education for Newborn Screening

October 7, 2024

10:30 AM - 12:00 PM (ET)

Past

Materials

Speaker Bios

About

The National Academies are conducting a congressionally mandated consensus study on Newborn Screening: Current Landscape and Future Directions, sponsored by the Department of Health and Human Services’ Office on Women’s Health with additional support from the Chan Zuckerberg Initiative. The committee’s task is to examine newborn screening (NBS) systems, processes, and research in the United States and provide short-term options to strengthen existing NBS programs and a roadmap to be accomplished over the next 5-15 years. The report will be released in the spring of 2025. This webinar will be focused on parent education for newborn screening and invite those in relevant professional societies to reflect on the study task as it relates to their work.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Newborn Screening: Current Landscape and Future Directions Listening Session: Healthcare Providers

May 13, 2024

12:00 PM - 2:30 PM (ET)

Past

Materials

Listening Sessions_What to Expect

About

Several small group listening sessions will be led by staff to solicit perspectives from communities interested in or impacted by newborn screening. Sessions are for participants only and advance registration is required.

Listening sessions are being held for the following groups:

Newborn screening professionals. Wednesday May 1: noon Eastern / 9am Pacific.
Rare disease patients, families and advocacy organizations. Sunday May 5: 1pm Eastern / 10am Pacific.
Health administrators, payors, and healthcare industry. Monday May 6: noon Eastern / 9am Pacific
Healthcare providers. Monday May 13: noon Eastern / 9am Pacific. Register HERE

View the What to Expect document for further information on participation guidelines. Input received will be incorporated in a thematic summary that will be provided to the study committee as input and made publicly available. To respect the privacy of participants, what is shared by participants during the listening session is not to be shared with other people. Participants will not be identified without permission in any publicly-available document.

Additional Information

Contact

Gayatri Somaiya

newbornscreening@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Newborn Screening: Current Landscape and Future Directions Listening Session: Health Administrators, Payors, and Industry

May 6, 2024

12:00 PM - 2:30 PM (ET)

Past

Materials

Listening Sessions_What to Expect

About

Several small group listening sessions will be led by staff to solicit perspectives from communities interested in or impacted by newborn screening. Sessions are for participants only and advance registration is required.

Listening sessions are being held for the following groups:

Newborn screening professionals. Wednesday May 1: noon Eastern / 9am Pacific.
Rare disease patients, families and advocacy organizations. Sunday May 5: 1pm Eastern / 10am Pacific.
Health administrators, payors, and healthcare industry. Monday May 6: noon Eastern / 9am Pacific
Healthcare providers. Monday May 13: noon Eastern / 9am Pacific.

View the What to Expect document for further information on participation guidelines. Input received will be incorporated in a thematic summary that will be provided to the study committee as input and made publicly available. To respect the privacy of participants, what is shared by participants during the listening session is not to be shared with other people. Participants will not be identified without permission in any publicly-available document.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Gayatri Somaiya

newbornscreening@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Newborn Screening: Current Landscape and Future Directions Listening Session: Rare Disease Community

May 5, 2024

1:00 PM - 3:30 PM (ET)

Past

Materials

Listening Sessions_What to Expect

About

Several small group listening sessions will be led by staff to solicit perspectives from communities interested in or impacted by newborn screening. Sessions are for participants only and advance registration is required.

Listening sessions are being held for the following groups:

Newborn screening professionals. Wednesday May 1: noon Eastern / 9am Pacific.
Rare disease patients, families and advocacy organizations. Sunday May 5: 1pm Eastern / 10am Pacific.
Health administrators, payors, and healthcare industry. Monday May 6: noon Eastern / 9am Pacific
Healthcare providers. Monday May 13: noon Eastern / 9am Pacific.

View the What to Expect document for further information on participation guidelines. Input received will be incorporated in a thematic summary that will be provided to the study committee as input and made publicly available. To respect the privacy of participants, what is shared by participants during the listening session is not to be shared with other people. Participants will not be identified without permission in any publicly-available document.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Gayatri Somaiya

newbornscreening@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Newborn Screening: Current Landscape and Future Directions Listening Session: Newborn Screening Professionals

May 1, 2024

12:00 PM - 2:30 PM (ET)

Past

Materials

Listening Sessions - What to Expect

About

Several small group listening sessions will be led by staff to solicit perspectives from communities interested in or impacted by newborn screening. Sessions are for participants only and advance registration is required.

Listening sessions are being held for the following groups:

Newborn screening professionals. Wednesday May 1: noon Eastern / 9am Pacific. This session is full.
Rare disease patients, families and advocacy organizations. Sunday May 5: 1pm Eastern / 10am Pacific.
Health administrators, payors, and healthcare industry. Monday May 6: noon Eastern / 9am Pacific
Healthcare providers. Monday May 13: noon Eastern / 9am Pacific.

View the What to Expect document for further information on participation guidelines. Input received will be incorporated in a thematic summary that will be provided to the study committee as input and made publicly available. To respect the privacy of participants, what is shared by participants during the listening session is not to be shared with other people. Participants will not be identified without permission in any publicly-available document.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Gayatri Somaiya

newbornscreening@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Newborn Screening: Current Landscape and Future Directions: Webinar on Perspectives from Federal NBS Partners

March 8, 2024

11:00 AM - 1:00 PM (ET)

Past

Agenda

Download the Agenda

About

The National Academies are undertaking a congressionally mandated study to examine newborn screening (NBS) systems, processes, and research in the United States and provide short-term options to strengthen existing NBS programs and a visionary roadmap over the next 5-15 years. This information-gathering webinar will inform the study committee on the roles and perspectives of federal partners in the NBS system.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Newborn Screening: Current Landscape and Future Directions - Meeting 1b

January 26, 2024

11:00 AM - 2:00 PM (ET)

Past

Materials

Speaker Biographies

About

The Committee on Newborn Screening: Current Landscapes and Future Directions will hold a virtual public information-gathering session with speakers from the Department of Health and Human Services, which provided support for the study, and additional invited experts. The session will discuss:

Goals of the study
Perspectives on the study task, with discussions from state/regional newborn screening (NBS) programs and child heath and rare disease organizations
Discussion on the congressional origin of the study

Future information-gathering sessions will be held during Spring 2024 and the committee's report is expected to be released in Spring 2025.

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Report Release Preparation

April 25, 2025

11:00 AM - 12:30 PM (ET)

Past

About

The committee met to prepare for report release and dissemination activities.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Mei Baker
Wendy Chung
Titilope Fasipe
Amanda Ingram
Jose Pagan
Scott Shone
Kayte Spector-Bagdady

The following topics were discussed in the closed sessions:

The committee discussed preparations for report release.

The following materials (written documents) were made available to the committee in the closed sessions:

Briefing slides; briefing talking points.

Date of posting of Closed Session Summary:

May 05, 2025

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Response to Review Meeting no. 3

March 12, 2025

1:00 PM - 2:30 PM (ET)

Past

About

The committee met to discuss possible report revisions and finalizations for the report response to review.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Donald Bailey
Mei Baker
Jewel Mullen
Jose Pagan
Kayte Spector-Bagdady
Scott Shone
Wendy Chung
Jochen Profit
Amanda Ingram
Titilope Fasipe
Faith Fletcher
Beth Tarini

The following topics were discussed in the closed sessions:

The committee discussed and came to a consensus on the final version of the report.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

March 19, 2025

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Response to Review Meeting No. 2

February 24, 2025

2:30 PM - 4:00 PM (ET)

Past

About

The Committee met to discuss the response to the report review and possible revisions.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Titi Fasilope
Don Bailey Jr.
Beth Tarini
Mei Baker
Jewel Mullen
Kayte Spector-Bagdady
Amanda Ingram
Scott Shone
Wendy Chung
Meghan Halley
Jochen Profit
Jose Pagan

The following topics were discussed in the closed sessions:

Response to the report review and possible revisions

The following materials (written documents) were made available to the committee in the closed sessions:

Updated draft report.

Date of posting of Closed Session Summary:

February 26, 2025

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Response to Review Meeting

February 5, 2025

2:30 PM - 4:00 PM (ET)

Past

About

The Committee met to discuss the response to the report review and possible revisions.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Scott Shone
Jochen Profit
Jewel Mullen
Kayte Spector-Bagdady
Meghan Halley
Mei Baker
Titilope Fasipe
Wendy Chung
Amanda Ingram

The following topics were discussed in the closed sessions:

Response to issues raised during the report review.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

February 05, 2025

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Tele Conference Closed

Newborn Screening: Pre-Review Meeting No. 5

December 31, 2024

11:30 AM - 12:30 PM (ET)

Past

About

Committee discussion of draft report contents and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Mei Baker
Wendy Chung
Titilope Fasipe
Faith Fletcher
Meghan Halley
Jose Pagan
Jochen Profit
Beth Tarini
Krystal Tsosie

The following topics were discussed in the closed sessions:

Members discussed the draft report.

The following materials (written documents) were made available to the committee in the closed sessions:

draft report.

Date of posting of Closed Session Summary:

January 03, 2025

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Pre-Review Meeting No. 4

December 16, 2024

10:00 AM - 11:00 AM (ET)

Past

About

Committee discussion of draft report contents and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Meghan Halley
Mei Baker
Faith Fletcher
Titilope Fasipe
Meghan Halley
Amanda Ingram
Jose Pagan
Jochen Profit
Kayte Spector-Bagdady
Scott Shone
Beth Tarini

The following topics were discussed in the closed sessions:

Members discussed the draft report and recommendations.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft report

Date of posting of Closed Session Summary:

December 20, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Tele Conference Closed

Newborn Screening: Pre-Review Meeting No. 3

December 10, 2024

12:00 PM - 1:30 PM (ET)

Past

About

Committee discussion of draft report contents and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Mei Baker
Titilope Fasipe
Meghan Halley
Amanda Ingram
Jose Pagan
Kayte Spector-Bagdady
Scott Shone
Beth Tarini

The following topics were discussed in the closed sessions:

Members discussed the draft report and recommendations.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft report

Date of posting of Closed Session Summary:

December 13, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Pre-Review Meeting No. 2

December 4, 2024

1:30 PM - 3:00 PM (ET)

Past

About

Committee discussion of draft report contents and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Jewel Mullen
Mei Baker
Faith Fletcher
Scott Shone
Jose Pagan
Jochen Profit
Amanda Ingram
Wendy Chung
Titilope Fasipe

The following topics were discussed in the closed sessions:

The draft report and recommendations were discussed.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft of the report.

Date of posting of Closed Session Summary:

December 13, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Pre-Review Meeting No.1

November 21, 2024

12:00 PM - 1:30 PM (ET)

Past

About

Committee discussion of draft report contents and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Mei Baker
Beth Tarini
Jewel Mullen
Scott Shone
Jochen Profit
Kayte Spector-Bagdady
Meghan Halley
Faith Fletcher

The following topics were discussed in the closed sessions:

The committee discussed the report and the conclusions and recommendations.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft of the report.

Date of posting of Closed Session Summary:

December 13, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Meeting 5

November 11 - 12, 2024

Past

About

On November 11 and 12, the Committee on Newborn Screening: Current Landscape and Future Directions will hold a closed session meeting.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Donald Bailey
Mei Baker
Wendy Chung
Titilope Fasipe
Faith Fletcher
Meghan Halley
Amanda Ingram
Jose Pagan
Jochen Profit
Scott Shone
Kayte Spector-Bagdady
Beth Tarini

The following topics were discussed in the closed sessions:

Report content and draft conclusions and recommendations were discussed

The following materials (written documents) were made available to the committee in the closed sessions:

Briefing book - draft report chapters; draft report conclusions and recommendations

Date of posting of Closed Session Summary:

November 18, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #4 Meeting

November 1, 2024

4:00 PM - 5:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Faith Fletcher
Meghan Halley
Kayte Spector-Bagdady

The following topics were discussed in the closed sessions:

Members discussed ethical frameworks and principles to guide decision-making on newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft text

Date of posting of Closed Session Summary:

November 11, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Tele Conference Closed

Newborn Screening: Current Landscape and Future Directions: Working Group #6 Meeting

October 29, 2024

3:00 PM - 4:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Amanda Ingram
Jochen Profit
Scott Shone

The following topics were discussed in the closed sessions:

Members continued to discuss goals, mechanisms, and incentives to support newborn screening programs.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

October 30, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Tele Conference Closed

Newborn Screening: Current Landscape and Future Directions: Working Group #5 Meeting

October 25, 2024

1:00 PM - 2:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Titilope Fasipe
Jose Pagan

The following topics were discussed in the closed sessions:

Members continued to discuss vision and systems supporting newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

October 30, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #4 Meeting

October 23, 2024

3:15 PM - 4:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Faith Fletcher
Meghan Halley
Kayte Spector-Bagdady

The following topics were discussed in the closed sessions:

Members discussed ethical frameworks and principles to guide decision-making on newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft text

Date of posting of Closed Session Summary:

November 11, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Working Group #6 Meeting

October 15, 2024

5:00 PM - 6:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Amanda Ingram
Jochen Profit
Scott Shone

The following topics were discussed in the closed sessions:

Members discussed mechanisms to support newborn screening programs.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

October 15, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #4 Meeting

October 7, 2024

1:00 PM - 2:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Faith Fletcher
Meghan Halley

The following topics were discussed in the closed sessions:

Members discussed ethical frameworks and principles to guide decision-making on newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft Text

Date of posting of Closed Session Summary:

October 14, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #5 Meeting

October 4, 2024

3:00 PM - 4:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Titilope Fasipe
Jose Pagan

The following topics were discussed in the closed sessions:

Members continued to discuss vision and systems supporting newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

NA

Date of posting of Closed Session Summary:

October 10, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #4 Meeting

September 26, 2024

12:00 PM - 1:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Meghan Halley
Kayte Spector-Bagdady

The following topics were discussed in the closed sessions:

Members discussed ethical frameworks and principles to guide decision-making on newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft text

Date of posting of Closed Session Summary:

October 01, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #6 Meeting

September 26, 2024

10:00 AM - 11:00 AM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Amanda Ingram
Jochen Profit
Scott Shone

The following topics were discussed in the closed sessions:

Members discussed mechanisms to support newborn screening programs.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

October 01, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #5 Meeting

September 19, 2024

9:00 AM - 10:00 AM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Titilope Fasipe
Jose Pagan
Beth Tarini

The following topics were discussed in the closed sessions:

Members discussed mechanisms for national coordination in newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft outline

Date of posting of Closed Session Summary:

September 20, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #4 Meeting

September 13, 2024

3:00 PM - 3:30 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Faith Fletcher
Meghan Halley
Kayte Spector-Bagdady

The following topics were discussed in the closed sessions:

Members discussed ethical principles to guide decision-making for newborn screening in the future.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft Outline

Date of posting of Closed Session Summary:

September 20, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Meeting 4

September 9 - 10, 2024

Past

About

On September 9 and 10, the Committee on Newborn Screening: Current Landscape and Future Directions will hold a closed session meeting.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

- Jewel Mullen
- Don Bailey
- Mei Baker
- Wendy Chung
- Titilope A. Fasipe
- Faith Fletcher
- Meghan Halley
- Amanda Dawn Ingram
- Jose A. Pagan
- Jochen Profit
- Scott M. Shone
- Kayte Spector-Bagdady
- Beth A. Tarini

The following topics were discussed in the closed sessions:

The committee discussed potential conclusions and recommendations to appear in the report.

The following materials (written documents) were made available to the committee in the closed sessions:

- Agenda
- Briefing Book

Date of posting of Closed Session Summary:

September 12, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #3 Meeting

August 21, 2024

12:00 PM - 1:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Mei Baker
Don Bailey

The following topics were discussed in the closed sessions:

Members continued to discuss research infrastructure to support newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

August 22, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions: Conference Call

August 20, 2024

12:30 PM - 2:00 PM (ET)

Past

About

This is a closed-session meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Mei Baker
Titilope Fasipe
Faith Fletcher
Meghan Halley
Amanda Ingram
Jewel Mullen
Jose Pagan
Jochen Profit
Scott Shone
Beth Tarini

The following topics were discussed in the closed sessions:

The committee discussed the future purpose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft text

Date of posting of Closed Session Summary:

August 22, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #1 Meeting

August 19, 2024

10:00 AM - 11:00 AM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Titilope Fasipe
Amanda Ingram
Jose Pagan
Jochen Profit
Beth Tarini

The following topics were discussed in the closed sessions:

Members discussed NBS programs aims, data elements, and relevant data collection and analysis efforts.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

August 19, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #2 Meeting

August 16, 2024

5:00 PM - 6:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Wendy Chung
Faith Fletcher
Meghan Halley
Jewel Mullen
Scott Shone

The following topics were discussed in the closed sessions:

The working group continued to discuss the aims and purpose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft text

Date of posting of Closed Session Summary:

August 19, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #2 Meeting

August 1, 2024

6:00 PM - 7:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Wendy Chung
Faith Fletcher
Meghan Halley
Jewel Mullen

The following topics were discussed in the closed sessions:

The working group continued to discuss the aims and purpose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

August 08, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Engagement Summary Discussion

July 31, 2024

12:00 PM - 2:00 PM (ET)

Past

About

This is a closed-session meeting of the consensus study committee members to review the engagement summary.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Don Bailey
Mei Baker
Titilope Fasipe
Meghan Halley
Jose Pagan
Scott Shone
Beth Tarini

The following topics were discussed in the closed sessions:

The committee discussed a draft engagement summary authored by Susanna Haas Lyons Consulting.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft Engagement Summary authored by Susanna Haas Lyons Consulting

Date of posting of Closed Session Summary:

August 01, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #2

July 18, 2024

2:00 PM - 3:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Wendy Chung
Faith Fletcher
Jewel Mullen
Scott Shone

The following topics were discussed in the closed sessions:

The working group continued to discuss the aims and purpose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

July 19, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #3 Meeting

July 15, 2024

3:00 PM - 4:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Mei Baker
Kayte Spector-Bagdady
Krystal Tsosie

The following topics were discussed in the closed sessions:

Members continued to discuss research infrastructure to support newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

July 17, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Newborn Screening: Current Landscape and Future Directions Working Group #1 Meeting

July 15, 2024

10:00 AM - 11:00 AM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Titilope Fasipe
Jose Pagan
Jochen Profit
Beth Tarini

The following topics were discussed in the closed sessions:

Members continued to discuss system elements, infrastructure, and data associated with newborn screening programs.

The following materials (written documents) were made available to the committee in the closed sessions:

N/A

Date of posting of Closed Session Summary:

July 15, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #2 Meeting

June 28, 2024

5:00 PM - 6:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Wendy Chung
Faith Fletcher
Meghan Halley
Scott Shone

The following topics were discussed in the closed sessions:

The working group discussed the aims and purpose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

none

Date of posting of Closed Session Summary:

July 02, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #3 Meeting

June 25, 2024

3:00 PM - 4:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Mei Baker
Krystal Tsosie

The following topics were discussed in the closed sessions:

The working group discussed types of research and research infrastructures relevant to newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

None

Date of posting of Closed Session Summary:

July 02, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Engagement Working Group Meeting

June 25, 2024

1:00 PM - 2:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Titilope Fasipe
Faith Fletcher
Meghan Halley

The following topics were discussed in the closed sessions:

Committee members discussed the draft engagement summary.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft Engagement Summary

Date of posting of Closed Session Summary:

July 02, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #1 Meeting

June 24, 2024

9:00 AM - 10:00 AM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Titilope Fasipe
Amanda Ingram
Jose Pagan
Jochen Profit
Beth Tarini

The following topics were discussed in the closed sessions:

The group discussed processes, infrastructure, and data aims and elements associated with newborn screening programs.

The following materials (written documents) were made available to the committee in the closed sessions:

preliminary outline.

Date of posting of Closed Session Summary:

June 24, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #2 Meeting

June 17, 2024

6:00 PM - 7:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Wendy Chung
Faith Fletcher
Meghan Halley

The following topics were discussed in the closed sessions:

The working group discussed the aims and purpose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

Draft text.

Date of posting of Closed Session Summary:

June 20, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #3 Meeting

June 4, 2024

2:00 PM - 3:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Don Bailey
Mei Baker
Katye Spector-Bagdady
Krystal Tsosie

The following topics were discussed in the closed sessions:

The working group discussed types of research and research infrastructures relevant to newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

none.

Date of posting of Closed Session Summary:

June 05, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #2 Meeting

June 3, 2024

6:00 PM - 7:00 PM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Wendy Chung
Faith Fletcher
Meghan Halley
Scott Shone

The following topics were discussed in the closed sessions:

The working group discussed the aims and pupose of newborn screening.

The following materials (written documents) were made available to the committee in the closed sessions:

none.

Date of posting of Closed Session Summary:

June 05, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions Working Group #1 Meeting

June 3, 2024

10:00 AM - 11:00 AM (ET)

Past

About

This is a closed-session working group meeting of the consensus study committee members.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Titilope Fasipe
Amanda Ingram
Jose Pagan
Beth Tarini

The following topics were discussed in the closed sessions:

The working group discussed newborn screening data and data systems.

The following materials (written documents) were made available to the committee in the closed sessions:

none.

Date of posting of Closed Session Summary:

June 05, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting

Newborn Screening: Current Landscape and Future Directions: Meeting 3

May 16 - 17, 2024

Past

Materials

About

On May 16th, the Committee on Newborn Screening: Current Landscape and Future Directions will hold a workshop on forward-looking opportunities and challenges related to the potential implementation of new technologies and data collection strategies. The committee will hold a closed session meeting on May 17th.

Additional Information

Is it a Closed Session event?

Partially Closed

The following committee members were present at the closed sessions of the event

- Jewel Mullen
- Don Bailey
- Mei Baker
- Titilope A. Fasipe
- Faith Fletcher
- Meghan Halley
- Amanda Dawn Ingram
- Jose A. Pagan
- Jochen Profit
- Scott M. Shone
- Kayte Spector-Bagdady
- Beth A. Tarini

The following topics were discussed in the closed sessions:

Members of the Committee on Newborn Screening: Current Landscape and Future Directions held an open session workshop on May 16 and a closed session meeting on May 17. During the closed session, committee members reflected on the presentations from the guest speakers during the workshop and discussed report content and relevant materials. The committee also discussed its next steps with report development.

The following materials (written documents) were made available to the committee in the closed sessions:

- Agenda
- Briefing Book

Date of posting of Closed Session Summary:

May 20, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting

Newborn Screening: Current Landscape and Future Directions: Meeting 2

March 26 - 27, 2024

Past

Agenda

Download the Agenda

About

On March 26th, the Committee on Newborn Screening: Current Landscape and Future Directions will hold a workshop to discuss considerations for adding diseases to newborn screening programs. The committee will hold a closed session meeting on March 27th.

Additional Information

Is it a Closed Session event?

Partially Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen, Don Bailey, Mei Baker, Wendy K. Chung, Titilope A. Fasipe, Meghan Halley, Amanda Dawn Ingram, Jochen Profit, Scott M. Shone, Kayte Spector-Bagdady, and Beth A. Tarini

The following topics were discussed in the closed sessions:

Members of the Committee on Newborn Screening: Current Landscape and Future Directions held an open session workshop on March 26 and a closed session meeting on March 27. During the closed session, committee members reflected on the presentations from the guest speakers during the workshop and discussed report content and relevant materials. The committee also received a briefing from the engagement consultant team on future engagement plans.

The following materials (written documents) were made available to the committee in the closed sessions:

- Briefing book
- Agenda

Date of posting of Closed Session Summary:

April 03, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions: Committee Call Feb. 27

February 27, 2024

1:00 PM - 2:00 PM (ET)

Past

About

This is a closed session virtual discussion among the committee examining newborn screening systems, processes, and research in the United States.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Donald Bailey
Mei Baker
Wendy Chung
Titilope Fasipe
Meghan Halley
Amanda Ingram
Jose Pagan
Jochen Profit
Scott Shone
Kayte Spector-Bagdady
Beth Tarini
Krystal Tsosie

The following topics were discussed in the closed sessions:

The committee completed discussion of members' backgrounds and relevant relationships, and discussed how newborn screening programs currently operate.

The following materials (written documents) were made available to the committee in the closed sessions:

none.

Date of posting of Closed Session Summary:

February 27, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions - Working Group Call Feb. 16

February 16, 2024

4:30 PM - 6:00 PM (ET)

Past

About

This is a closed session working group call among consensus study committee members, aimed at discussing study engagement plans.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Faith Fletcher
Titilope Fasipe
Meghan Halley

The following topics were discussed in the closed sessions:

Committee members discussed preliminary information gathering and engagement plans.

The following materials (written documents) were made available to the committee in the closed sessions:

Preliminary engagement plan outline.

Date of posting of Closed Session Summary:

February 20, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions - Meeting 1c

February 1, 2024

11:30 AM - 2:30 PM (ET)

Past

About

The Committee on Newborn Screening: Current Landscapes and Future Directions will meet for a closed session to undertake initial study planning.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Donald Bailey
Mei Baker
Titilope Fasipe
Faith Fletcher
Meghan Halley
Amanda Ingram
Jose Pagan
Jochen Profit
Scott Shone
Kayte Spector-Bagdady
Beth Tarini
Krystal Tsosie

The following topics were discussed in the closed sessions:

The committee discussed initial information gathering and engagement plans.

The following materials (written documents) were made available to the committee in the closed sessions:

Preliminary information gathering and engagement plans.

Date of posting of Closed Session Summary:

February 06, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Newborn Screening: Current Landscape and Future Directions - Meeting 1a

January 24, 2024

9:00 AM - 11:00 AM (ET)

Past

About

The Committee on Newborn Screening: Current Landscapes and Future Directions will meet for a closed session. This will be the first virtual meeting of the commitee to undertake initial study orientation and planning.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Jewel Mullen
Donald Bailey
Mei Baker
Titilope Fasipe
Faith Fletcher
Meghan Halley
Amanda Ingram
Jose Pagan
Jochen Profit
Scott Shone
Kayte Spector-Bagdady
Beth Tarini
Krystal Tsosie

The following topics were discussed in the closed sessions:

The committee discussed its composition and task.

The following materials (written documents) were made available to the committee in the closed sessions:

Statement of task.

Date of posting of Closed Session Summary:

February 01, 2024

Contact

Gayatri Somaiya

gsomaiya@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

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Newborn Screening: Current Landscape and Future Directions

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