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June 16, 2014 CFSAC Webinar Meeting

June 16, 2014 - June 17, 2014

Agenda

Day 1

June 16, 2014

12:00 p.m. to 5:00 p.m.

Time Topic Presentation

12:00 p.m.

Call to Order
Roll Call

Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)

12:10 p.m.

Welcome

Wanda K. Jones, Dr. P.H.
Principal Deputy Assistant Secretary of Health, HHS

12:15 p.m.

Opening Remarks

Housekeeping

Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)

12:30 p.m.

Agency Updates

CDC, AHRQ, NIH

1:30 p.m.

Public Comment

Public

2:30 p.m.

Break

 

2:45 p.m.

ME/CFS Researcher and Clinician- Scientist Recruitment Workgroup

Dane B. Cook, Ph.D
Chair

Workgroup Members

3:45 p.m.

Committee Discussion

Committee members

5:00 p.m.

Adjourn

 

Day 2

June 17, 2014

9:00 a.m. to 5:00 p.m.

Time Topic Presentation

9:00 a.m.

Call to Order
Roll Call

Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer

 9:15 a.m.

Logistics

Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)

 9:30 a.m.

Agency Updates

CMS/FDA/HRSA

10:15 a.m.

Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)

Mark Kuhn, Analyst
Office of Medical Policy
Social Security Administration (SSA)

10:45 a.m.

Break

 

11:00 a.m.

Public Comment 

Public 

11:45 a.m. 

Lunch

 

1:00 p.m.

Patients Registry Models

Beth A. Collins Sharp, Ph.D., R.N.

PatientsLikeMe

Benjamin Heywood
Co-Founder and President

National Database for Autism Research

Dan Hall, Program Manager

2:00 p.m.

Community Liaison Organizations

NJCIDS, IACFS/ME, Solve ME/CFS
Initiative

2:15 p.m.

Future Directions

Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)

Epilepsy: A Model for
Collaborating

Margaret Jacobs
Science Community Liaison
American Epilepsy Society

Post IOM Report

Anand Parekh, M.D., M.P.H.
Deputy Assistant Secretary for Health
(Science and Medicine) HHS

Discussion

Committee Members

Open Forum

Persons in attendance

3:45 p.m. 

Break

 

4:00 p.m. 

Committee Discussion

Committee Members

Open Forum

Persons in attendance

5:00 p.m. 

Adjourn

 

 

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