10:00 a.m. - 3:00 p.m. ET
Description
The Sickle Cell Disease Advisory Committee (SCDAC) makes recommendations on research priorities conducted or supported by NHLBI. The Committee also makes recommendations about long range plans of basic, clinical, applied, health education, and prevention related research concerning the scientific aspects of research programs on the nature, causes, diagnosis, treatment, and prevention of Sickle Cell Disease. The Committee will advise, consult with, and make recommendations to the Director, NIH, the Director, NHLBI, and the Director, DBDR.
10:00am-10:15am: Welcome and General Introductions
Titilope Fasipe, MD, PhD, Baylor College of Medicine/Texas Children’s Hospital, SCDAC Chair
Julie Panepinto, MD, MSPH, Director, DBDR, NHLBI, SCDAC Executive Secretary
Traci Mondoro, PhD, Associate Director, DBDR, NHLBI
Juan Salomon, MS, PMP, Cure Sickle Cell Initiative Coordinator, NHLBI
Idalia Yabe, PhD, Program Officer, NHLBI
10:15am-11:15am: Brief NHLBI SCD Program Updates
10:15-10:30am FDA Approval of commercial gene therapies and 15 year follow-up mandate
10:30-10:45am Overview of the Cure Sickle Cell Initiative
Gene therapy funded clinical trials
Natural History Data Resource
Long Term Follow Up overview
10:45-1:00pm: Experts to Provide an Overview of End Organ Assessments and Morbidity in SCD
10:45-10:50am: Introduction to Guest Speakers
Traci Mondoro, PhD
10:50-11:20am: SCD and the Lung
Speaker: Elizabeth Klings, MD
11:20-11:50pm: SCD and the Heart
Speaker: Ankit Desai, MD
11:50am-12:00pm: Break
12:00-12:30pm: SCD and the Brain
Speaker: Allison King, MD, MPH, PhD
12:30-1:00pm: SCD and the Kidney
Speaker: Jeffrey Lebensburger, DO
1:00pm-1:40pm: Lunch Break
1:40- 2:50pm Group discussion on end organ LTFU
General discussion
2:50- 3:00pm Final remarks and meeting adjourned.