Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

Webinar

Stakeholder Feedback on Report: Addressing Sickle Cell Disease

October 21, 2020

9:00 AM - 11:30 AM (ET)

Past

Agenda

About

The National Academies will hold a public webinar to discuss stakeholder feedback on its report, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.

On September 10, 2020, the National Academies of Sciences, Engineering, and Medicine released a new report entitled Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, which provides recommendations for improving health care for the approximately 100,000 people in the U.S. with SCD. This webinar will feature invited speakers, including the study sponsor, the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services (HHS) and speakers representing different relevant stakeholder groups sharing their feedback on the report recommendations and considerations for implementation.

For more information about the report visit: https://www.nationalacademies.org/our-work/addressing-sickle-cell-disease-a-strategic-plan-and-blueprint-for-action

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Henrietta Awo Osei-Anto

SickleCellStudy@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.

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action - Report Release Webinar

September 10, 2020

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

Past

Materials

Addressing Sickle Cell Disease - Report Release Webinar

About

On September 10, 2020, from 2:00 PM to 3:00 PM ET, join the National Academies of Sciences, Engineering, and Medicine for a webinar releasing a new report on sickle cell disease (SCD) in the U.S. and discussing a strategic plan and blueprint for improving care and outcomes for individuals with SCD.

The new report examines the current state of SCD in the U.S., including the health outcomes, complications, current guidelines for care, and the economic burden associated with the disease. The report also discusses current programs to screen for SCT and SCD, treatment and care programs for SCD, identifies existing gaps in research and programs and lays out guidance in the form of strategic objectives (strategic plan) and action steps (blueprint) for addressing SCD in the U.S.

Members of the expert committee that developed the report will outline their findings, conclusions, and key messages:

Marie C. McCormick (Committee Chair), Harvard University

Enrico Novelli, University of Pittsburgh

Kim Smith-Whitley, Children's Hospital of Philadelphia

Additional Information

Contact

Henrietta Awo Osei-Anto

SickleCellStudy@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.

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action - Meeting 1

February 21 - 22, 2019

Past

Agenda

Download the Agenda

About

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:

the epidemiology, health outcomes, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications of SCD such as stroke, kidney and heart problems, acute chest syndrome, and debilitating pain crises;
current guidelines and best practices for the care of patients with SCD;
to the extent possible, the economic burden associated with SCD; and current federal, state, and local programs related to SCD and SCT, including screening, monitoring and surveillance, treatment and care programs, research, and others.
The committee will provide guidance on priorities for programs, policies, and research and make recommendations as appropriate, regarding:
limitations and opportunities for developing national SCD patient registries and/or surveillance systems;
barriers in the healthcare sector associated with SCD, including access to care, workforce development, pain management, and transitions from pediatric to adult care;
needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and the expanded and optimal role of patient advocacy and community engagement groups.

Committee guidance should be formulated around strategic objectives (strategic plan) and action steps (blueprint). Throughout all the deliberations, the committee will give consideration to ethical issues related to SCD.

Additional Information

Is it a Closed Session event?

Partially Closed

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

All committee members were present for this meeting. The following committee members were present for this meeting via webcast.
Marie Clare McCormick
Gilda Barabino
Mary Catherine Beach
Michael R. DeBaun (present at this meeting, but has since resigned)
Lori E. Crosby (present via webcast on day 2)
Amy Dawson
Darius Lakdawalla
Jonathan D. Moreno
Ifeyinwa (Ify) Osunkwo
Susan Paulukonis
Kim Smith-Whitley

The following topics were discussed in the closed sessions:

Study background
Committee's process, role, and responsibilities
Statement of Task
Strategic approach for the study, report audience
Draft report outline
Literature review
Writing assignments
Group calls and future meetings

Date of posting of Closed Session Summary:

February 27, 2019

Contact

Cheri Banks

SickleCellStudy@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

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action - Meeting 5

September 11 - 12, 2019

Past

Agenda

Download the Agenda

About

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:

the epidemiology, health outcomes, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications of SCD such as stroke, kidney and heart problems, acute chest syndrome, and debilitating pain crises;
current guidelines and best practices for the care of patients with SCD;
to the extent possible, the economic burden associated with SCD; and current federal, state, and local programs related to SCD and SCT, including screening, monitoring and surveillance, treatment and care programs, research, and others.
The committee will provide guidance on priorities for programs, policies, and research and make recommendations as appropriate, regarding:
limitations and opportunities for developing national SCD patient registries and/or surveillance systems;
barriers in the healthcare sector associated with SCD, including access to care, workforce development, pain management, and transitions from pediatric to adult care;
needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and the expanded and optimal role of patient advocacy and community engagement groups.

Committee guidance should be formulated around strategic objectives (strategic plan) and action steps (blueprint). Throughout all the deliberations, the committee will give consideration to ethical issues related to SCD.

Additional Information

Is it a Closed Session event?

Partially Closed

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

The following committee members were present for this meeting:
Marie Clare McCormick
Gilda Barabino
Mary Catherine Beach (present in person on day one, present by phone on second days)
Lori E. Crosby
Amy Dawson
Darius Lakdawalla
Bernard Lopez
Jonathan D. Moreno (not present on either day)
Enrico Novelli
Andrew Orr-Skirvin (not present on either day)
Ifeyinwa (Ify) Osunkwo
Susan Paulukonis (present by phone on both days)
Charmaine Royal
Kim Smith-Whitley

The following topics were discussed in the closed sessions:

Summary of the open session
Draft action plan and framework
Remaining gaps in information for individual chapters
Review process
Dissemination

Date of posting of Closed Session Summary:

September 12, 2019

Contact

Hayat Yusuf

SickleCellStudy@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

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action - Meeting 4

July 9 - 10, 2019

Past

About

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:

the epidemiology, health outcomes, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications of SCD such as stroke, kidney and heart problems, acute chest syndrome, and debilitating pain crises;
current guidelines and best practices for the care of patients with SCD;
to the extent possible, the economic burden associated with SCD; and current federal, state, and local programs related to SCD and SCT, including screening, monitoring and surveillance, treatment and care programs, research, and others.
The committee will provide guidance on priorities for programs, policies, and research and make recommendations as appropriate, regarding:
limitations and opportunities for developing national SCD patient registries and/or surveillance systems;
barriers in the healthcare sector associated with SCD, including access to care, workforce development, pain management, and transitions from pediatric to adult care;
needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and the expanded and optimal role of patient advocacy and community engagement groups.

Committee guidance should be formulated around strategic objectives (strategic plan) and action steps (blueprint). Throughout all the deliberations, the committee will give consideration to ethical issues related to SCD.

Additional Information

Is it a Closed Session event?

Partially Closed

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

The following committee members were present for this meeting.
Marie Clare McCormick
Gilda Barabino
Mary Catherine Beach (present by phone on both days)
Lori E. Crosby
Amy Dawson
Darius Lakdawalla (not present on either day)
Bernard Lopez
Jonathan D. Moreno (not present on either day)
Enrico Novelli
Andrew Orr-Skirvin
Ifeyinwa (Ify) Osunkwo
Susan Paulukonis
Charmaine Royal
Kim Smith-Whitley

The following topics were discussed in the closed sessions:

Discussion on information gathered from the patient panel, CDC updates, and the Hemophilia of Georgia Center for Bleeding & Clotting Disorders of Emory presentations
Discussion of drafted information for all chapters and potential recommendations
Reviewed upcoming milestones and timeline for final version of draft report

Date of posting of Closed Session Summary:

July 11, 2019

Contact

Hayat Yusuf

SickleCellStudy@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

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action - Meeting 3

June 3 - 4, 2019

Past

Agenda

Download the Agenda

About

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:

the epidemiology, health outcomes, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications of SCD such as stroke, kidney and heart problems, acute chest syndrome, and debilitating pain crises;
current guidelines and best practices for the care of patients with SCD;
to the extent possible, the economic burden associated with SCD; and current federal, state, and local programs related to SCD and SCT, including screening, monitoring and surveillance, treatment and care programs, research, and others.
The committee will provide guidance on priorities for programs, policies, and research and make recommendations as appropriate, regarding:
limitations and opportunities for developing national SCD patient registries and/or surveillance systems;
barriers in the healthcare sector associated with SCD, including access to care, workforce development, pain management, and transitions from pediatric to adult care;
needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and the expanded and optimal role of patient advocacy and community engagement groups.

Committee guidance should be formulated around strategic objectives (strategic plan) and action steps (blueprint). Throughout all the deliberations, the committee will give consideration to ethical issues related to SCD.

Additional Information

Is it a Closed Session event?

Partially Closed

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

All committee members were present for this meeting. The following committee members were present for this meeting.
Marie Clare McCormick
Gilda Barabino
Mary Catherine Beach
Lori E. Crosby
Amy Dawson
Darius Lakdawalla
Bernard Lopez
Jonathan D. Moreno
Enrico Novelli
Andrew Orr-Skirvin
Ifeyinwa (Ify) Osunkwo
Susan Paulukonis
Charmaine Royal
Kim Smith-Whitley (present on day 1)

The following topics were discussed in the closed sessions:

Questions to ask panel members
Summary discussion of information gathered from the third open session
Literature for the report and evidence gaps
Draft chapters
Future meeting goals and deadlines

Date of posting of Closed Session Summary:

June 04, 2019

Contact

Hayat Yusuf

SickleCellStudy@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

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action - Meeting 2

April 16 - 17, 2019

Past

Agenda

Download the Agenda

About

An ad hoc committee will be convened to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:

the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications of SCD such as stroke, kidney and heart problems, acute chest syndrome, and debilitating pain crises;
current guidelines and best practices for the care of patients with SCD;
to the extent possible, the economic burden associated with SCD; and
current federal, state, and local programs related to SCD and SCT, including screening, monitoring and surveillance, treatment and care programs, research, and others.

The committee will provide guidance on priorities for programs, policies, and research and make recommendations as appropriate, regarding:

limitations and opportunities for developing national SCD patient registries and/or surveillance systems;
barriers in the healthcare sector associated with SCD and SCT, including access to care and quality of care, workforce development, pain management, and transitions from pediatric to adult care;
needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and
the expanded and optimal role of patient advocacy and community engagement groups.

Committee guidance should be formulated around strategic objectives (strategic plan) and action steps (blueprint). Throughout all the deliberations, the committee will give consideration to ethical issues related to SCD and SCT.

Additional Information

Is it a Closed Session event?

Partially Closed

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

All committee members were present for this meeting. The following committee members were present for this meeting either in person or via zoom.
Marie Clare McCormick
Gilda Barabino
Mary Catherine Beach (in-person on day 1 & via zoom on day 2)
Lori E. Crosby
Amy Dawson
Darius Lakdawalla
Bernard Lopez
Jonathan D. Moreno (present via zoom on day 1 & absent on day 2)
Enrico Novelli (present in-person on day 1 & absent on day 2)
Andrew Orr-Skirvin (present via zoom on day 1 & in-person on day 2)
Ifeyinwa (Ify) Osunkwo
Susan Paulukonis (present on day 1 in-person)
Charmaine Royal
Kim Smith-Whitley

The following topics were discussed in the closed sessions:

Statement of Task
Presentations from the open session and what parts can be incorporated into the report
Committee's process, role, and responsibilities
Literature review
Report outline
Writing Assignments
Deadlines

Date of posting of Closed Session Summary:

April 17, 2019

Contact

Hayat Yusuf

(202) 334-3145
SickleCellStudy@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.

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Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

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Stakeholder Feedback on Report: Addressing Sickle Cell Disease