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Workshop on Adults With Sickle Cell Disease:
Meeting Unmet Needs

Preliminary Agenda

Time Topic Speaker(s)
Day 1

7:30 a.m.



8:30 a.m

Welcome NHLBI


8:40 a.m.

Opening Address


8:55 a.m.

Consumers' Perspectives


Personal Histories

Dorothy Moore, M.D.
Hoxi Jones-Carranza

9:25 a.m.

Houston Consumers' Panel

Sarah Iden

9:35 a.m.

Workshop Consumers' Panel

Kimberly Elion
Eric Kirkwood
Shirley Miller

10:20 a.m.



Overview of the Problems


10:35 a.m.

Major Health Problems

Cage Johnson, M.D.

10:50 a.m.

Economic and Social Barriers

Joseph Telfair, Dr.PH, MPH/MSW

11:05 a.m.

Information and Educational Barriers for Patients and Providers

Jeanne Smith, M.D.

11:20 a.m.

Quality of Life Issues

Paul Swerdlow, M.D.

11:35 a.m.

Health Care Availability and Quality

Elliott Vichinsky, M.D.

11:50 a.m. -
12:20 p.m.

Panel Discussion, Q and A


12:20 p.m. -
1:20 p.m.



Pilot Programs and Models


1:20 p.m.

Work Incentives

Charles F. Whitten, M.D.

1:30 p.m.

Scholastics Programs

Winifred Wang, M.D.

1:40 p.m.

Transition Study

Joseph Telfair, Dr.PH., MPH/MSW

1:50 p.m.

Emory Univesrity Web site

James Eckman, M.D.

2:00 p.m.

Life Skills Program

Sharon Lewis

2:10 p.m.

Case Management in a Community-Based Program

Gladys Ashe Robinson, M.E.D.

2:20 p.m.

Medical Student Buddy Program

Cassandra Josephson, M.D.

2:30 p.m.

Health Services

Christy Woods, M.D., M.P.H.

2:40 p.m.

Panel Discussion, Q and A


3:00 p.m.

Charge to Discussion Groups


3:05 p.m.



3:20 p.m.

Discussion Groups

  • Social and Economic Barriers and Needs
  • Quality of Life Issues
  • Health Care Availability and Quality
  • Information and Educational Barriers and Needs
  • A "fill-in-the-gaps" discussion group

5:20 p.m.

Meeting adjourned for the day


7:00 p.m.

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Dinner (Information will be emailed to registrants)

Day 2

8:30 a.m. -
12:30 p.m.

Discussion Groups


10:30 a.m.



12:30 p.m. -
1:30 p.m.



1:30 p.m. -
4:00 p.m.

Discussion Groups' Presentations and Recommendations


3:00 p.m.



4:00 p.m.

Wrap Up: What's next?


4:30 p.m.

Meeting Adjourned

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