Sickle Cell Disease in Social Security Disability Evaluations

Webinar

Webinar 3: Functional Outcomes of Sickle Cell Disease — The Whole-Person Experience

February 21, 2025

10:00 AM - 1:00 PM (ET)

Past

Discussion

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Materials

Speaker Bios

About

A National Academies consensus study committee will host the third in a series of public, information-gathering webinars including the perspectives of individuals living with sickle cell disease (SCD).

The webinar will focus on the multisystem effects of SCD and the overall mental and physical burden of the disease, with special attention to questions such as:

What are the effects of SCD on individuals’ day-to-day physical and mental health?
How do these effects of SCD affect individuals’ functioning, including the ability to engage in school or full-time work?
What is the overall burden of living with SCD and how might it change over time throughout an individual’s life?
To what extent does end-organ damage associated with SCD contribute to the overall burden and disease severity in individuals with SCD?
How, if at all, does the burden of end-organ damage vary by type of organ affected? Or by organ-specific severity or diagnostic threshold?
Might similar objective measurements of end-organ damage denote higher levels of severity or functional impact in an individual with SCD than in an individual without SCD?

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Webinar 2: Pain Management and Sickle Cell Disease

February 7, 2025

1:00 PM - 4:00 PM (ET)

Past

Materials

About

A National Academies consensus study committee funded by the Social Security Administration will host the second in a series of public, information-gathering webinars including the perspectives of individuals living with sickle cell disease (SCD).

The webinar will focus on pain management in sickle cell disease (SCD), with special attention to the following questions:

When and how often are parenteral opioid pain medications used to manage SCD pain crises?
What are indicators or contraindicators for their use?
How have best practices regarding opioid pain medication changed over the past 10 years?
What circumstances or factors might lead providers not to prescribe opioid pain medication even when indicated by current best practices?
What other pain medications might be administered in the context of a severe pain crisis and what, if anything, can the choice of alternative medications tell us about a patient’s symptom severity?
What non-pharmacological interventions, including traditional and alternative therapies and home remedies, are available to manage pain associated with SCD? Are they effective in managing severe acute pain crises and/or reducing their frequency?
What treatments or interventions used for acute sickle cell crises are equivalent to parenteral opioid medication in terms of medical severity of the underlying acute crisis (e.g., acute transfusion)?

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Webinar 1: Hospitalization and Sickle Cell Disease

December 20, 2024

1:00 PM - 4:00 PM (ET)

Past

Materials

SCD Webinar 1 Speaker Bios

About

A National Academies consensus study committee funded by the U.S. Social Security Administration will host the first in a series of public, information-gathering webinars including the perspectives of individuals living with sickle cell disease (SCD). The webinar will focus on hospitalization, highlighting acute SCD crises, including lived experience and barriers to access to care. The discussion may also address the effects of multiple hospitalizations on a person's functioning with respect to school and work.
The webinar also will cover hospital management of SCD, with special attention to the following questions:

When and how often is hospitalization used in the treatment of SCD?
What factors impact an individual’s decision to go to a hospital or other facility for treatment?
What factors lead to hospital staff’s decision on whether to admit a patient?
What factors determine the length of hospitalization?
What factors contribute to hospital readmissions within 30 days of discharge?
Are these factors unique to SCD, or used differently to inform decisions related to hospitalization for individuals with SCD compared to individuals with other conditions?
How have these considerations changed over the past ten years?

Additional Information

Is it a Closed Session event?

Not Closed

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations Meeting 6

June 24 - 25, 2025

Past

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Jennifer Koop
Marilyn Baffoe-Bonnie
Cece Calhoun
Jeffrey Glassberg
Coretta Jenerette
Ashley Jenkins
Shirley Johnson
Trish Kavanagh
Jerlym Porter
Ted Wun
Alex Power-Hays

The following topics were discussed in the closed sessions:

The final report and conclusions was discussed.

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

Report draft
agenda

Date of posting of Closed Session Summary:

June 30, 2025

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations Meeting 5

May 30, 2025

10:00 AM - 4:30 PM (ET)

Past

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Jennifer Koop
Marilyn Baffoe-Bonnie
Cece Calhoun
Jeffrey Glassberg
Coretta Jenerette
Ashley Jenkins
Shirley Johnson
Trish Kavanagh
Jerlym Porter
Ted Wun

The following topics were discussed in the closed sessions:

Discussed the content of the second report

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

Agenda
Report Drafts

Date of posting of Closed Session Summary:

June 23, 2025

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations: Meeting 4

April 24, 2025

10:00 AM - 5:00 PM (ET)

Past

About

Committee meeting 4 to discuss the second report

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Jennifer Koop
Ted Wun
Coretta Jenerette
Trish Kavanagh
Jeffrey Glassberg
Jerlym Porter
Shirley Johnson
Marilyn Baffoe-Bonnie
Alex Power-Hays
Cece Calhoun

The following topics were discussed in the closed sessions:

The second portion of the report was discussed

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

Agenda and report outlines

Date of posting of Closed Session Summary:

April 24, 2025

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations Report Discussion Call #1

March 18, 2025

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

Past

About

Meeting to discuss report sign off

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Jennifer Koop
Cecelia Calhoun
Martha Kenney
Ted Wun
Alex Power-Hays
Jeffrey Glassberg
Jerlym Porter
Coretta Jenerette
Ashley Jenkins
Trish Kavanagh

The following topics were discussed in the closed sessions:

Report sign off

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

Report draft

Date of posting of Closed Session Summary:

March 21, 2025

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations: Meeting #3

March 4 - 5, 2025

Past

About

Commitee meeting #3

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Jennifer Koop
Jerlym Porter
Shirley Johnson
Patricia Kavanagh
Ashley Jenkins
Ted Wun
Alexandra Power-Hays
Coretta Jenerette
Marilyn Baffoe-Bonnie

The following topics were discussed in the closed sessions:

Report chapter drafts and conclusions

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

Agenda
Draft report documents

Date of posting of Closed Session Summary:

March 12, 2025

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations: Meeting 2

January 22 - 23, 2025

Past

About

This is the second meeting for the Committee on Sickle Cell Disease in Social Security Disability Evaluations. Committee and staff will meet in private session to discuss report planning.

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Jennifer Koop
Marilyn Baffoe-Bonnie
Cece Calhoun
Jeffrey Glassberg
Coretta Jenerette
Ashley Jenkins
Shirley Johnson
Patricia Kavanagh
Martha Kenney
Jerlym Porter
Alexandra Power-Hays
Ted Wun

The following topics were discussed in the closed sessions:

Statement of Task
Report development
Webinar planning

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

Briefing Book
Chapter outline and drafts
Draft agendas for webinars

Date of posting of Closed Session Summary:

January 30, 2025

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations: Webinar Planning Call #1

November 22, 2024

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

Past

About

This is a meeting to discuss plans for Webinar 1

Additional Information

Is it a Closed Session event?

Institution Closed

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

Paul Volberding
Coretta Jenerette
Patricia Kavanagh

The following topics were discussed in the closed sessions:

Webinar 1 topics and speakers

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

Draft Agenda
List of potential speakers

Date of posting of Closed Session Summary:

November 25, 2024

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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

Sickle Cell Disease in Social Security Disability Evaluations Meeting 1

November 19, 2024

10:00 AM - 3:00 PM (ET)

Past

Agenda

Download the Agenda

About

This is the first meeting for the Committee on Sickle Cell Disease in Social Security Disability Evaluations. Committee and staff will meet in private session and host a public information gathering session. The public session will consist of presentations from agents of the Social Security Administration and Q&A with members of the committee and project staff.

Additional Information

Is it a Closed Session event?

Partially Closed

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

Paul Volberding
Jennifer Koop
Marilyn Baffoe-Bonnie
Cece Calhoun
Jeffrey Glassberg
Coretta Jenerette
Ashley Jenkins
Shirley Johnson
Patricia Kavanagh
Martha Kenney
Jerlym Porter
Alexandra Power-Hays
Ted Wun

The following topics were discussed in the closed sessions:

Bias and Conflict of Interest
Committee composition
Statement of task

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

Briefing Book

Date of posting of Closed Session Summary:

November 25, 2024

Contact

Eliana Pierotti

(202) 334-2768
epierotti@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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Sickle Cell Disease in Social Security Disability Evaluations

Dropdown items

Webinar 3: Functional Outcomes of Sickle Cell Disease — The Whole-Person Experience

Webinar 2: Pain Management and Sickle Cell Disease

Webinar 1: Hospitalization and Sickle Cell Disease