Graphic depicting blood cells.

NHLBI’s 2021 Annual Sickle Cell Disease Research Meeting

August 16 - 18, 2021


The 2021 NHLBI Annual Sickle Cell Disease Research Meeting is a 3-day meeting that provides a forum for investigators, practitioners, and interested health care providers to discuss the progress of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of sickle cell disease, and interact with other investigators and NHLBI program staff. This year’s program includes five symposia that cover a broad range of topics.


10:00 am - 10:05 am
Welcome and Announcements

W. Keith Hoots, M.D., National Heart, Lung and Blood Institute

10:05 am - 12 pm

10:05 am - 11:00 am
Sickle Cell Disease and CardiovAscular Risk-Red Cell Exchange Trial (SCD-CARRE)

Mark T. Gladwin, M.D., University of Pittsburgh

Darrell J. Triulzi, M.D., University of Pittsburgh

10:03 am - 11:00 am
ASH Research Collaborative: Accelerating SCD Research and Enhancing Care

Charles Abrams, M.D., University of Pennsylvania School of Medicine

Kathleen Hewitt, DNP, CPHQ, AACC, RN, American Society of Hematology

11:00 am - 11:30 am
Biomarkers in SCD with a Focus on Risk Stratification Therapy, Selection Therapy, Monitoring and Prediction of VOC

Patrick Hines, M.D., Wayne State University School of Medicine

11:30 am - 12:00 pm
Lifetime Medical Costs Attributable to SCD Among Non-Elderly Individuals with Commercial Insurance

Kate M. Johnson, Ph.D., University of Washington

12:00 pm - 1:30 pm
An Update on the Sickle Cell Trevor Thompson Transition Project (ST3P-UP)

Chair: Ifeyinwa (Ify) Osunkwo, M.D., M.P.H., Medicine Levine Cancer Institute

12:00 pm - 1:30 pm
Community Health Workers and mHealth for SCD Care

Kim Smith-Whitley, M.D., University of Pennsylvania

12:00 pm - 1:30 pm
Understanding Transition From Inside the Fishbowl

Raymona H. Lawrence, Dr.P.H., M.P.H., Georgia Southern University

1:30 pm - 2:00 pm

2:00 pm - 5:00 pm

2:00 pm - 3:00 pm
Role of Erythrocyte Mitochondrial Retention in the Pathophysiology of Sickle Cell Diseases

Angela Rivers, M.D., University of California

Automated Red Blood Cell Exchange: Optimal Transfusion Strategy for Disease Control and Iron Management

Shannon Kelly, M.D., University of California

Quantifying Binding Capacity of Plasma for Heme and Measurements of Heme Scavenger Proteins

Madhav Vissa, M.D., University of California

The Role of Spla2 in the Pathogenesis of Inflammatory Diseases: Its Predictive Value and Link to Novel Therapy (SCD, COVID-19, MIS-C)

Frans Kuypers, Ph.D., UCSF Benioff Children's Hospital Oakland

3:00 pm - 5:00 pm
Curative Therapies for SCD- I (Hematopoietic Stem Cell Transplant)

Chair: Lakshmanan Krishnamurti, M.D., Children’s Healthcare of Atlanta/Emory University
Speakers TBD

10:00 am - 10:05 am
Welcome and Announcements

10:00 am - 1:00pm

10:05 am - 10:30 am
Magnetic Characterization of Normal and SCD RBCs: Potential for Diagnosis and Separation

Jeffery Chalmers, M.D., Ohio State University

Payal Desai, M.D., Ohio State University

10:30 am - 11:00 am
Microfluidic Studies on SCD: Damage Accumulation Related to Repeated Hypoxia Cycles

Ming Dao, Ph.D., Massachusetts Institute of Technology

11:00 am - 12:00 pm
Stride-2 Investigator Meeting (by Invitation only)

Shannon Smith, M.D., Emory University

11:00 am - 1:30 pm
Curative Therapies for SCD- II (Gene Therapy/Editing)

Chair: Punam Malik, M.D., Cincinnati Children’s Hospital

Results from the ongoing LentiGlobin Gene Therapy for SCD Study HGB-206

Richard A. Colvin, M.D., Ph.D., Bluebird Bio

Post-Transcriptional Silencing of BCL11A as an Effective Genetic Treatment in SCD

David A. Williams, M.D., Boston Children’s Hospital and Harvard Medical School

Genetic Therapies for SCD: Disease Amelioration with Reduced Intensity Conditioning – an Update on the Momentum Study, and A Brief Introduction to Gene Editing

Punam Malik, M.D., Cincinnati Children's Hospital and University of Cincinnati

Progress Advancing Autologous Genome Edited HSC Therapies for SCD

Shengdar Tsai, Ph.D., St. Jude’s Children’s Research Hospital

CRISPR-Cas9 Corrected Hematopoietic Stem Cells for SCD

Mark Walters, M.D., University of California, San Francisco

1:30 pm - 2:00 pm

2:00 pm - 5:00 pm

2:00 pm - 5:00 pm
Transformative Technology for Pain in SCD

Chair: Kalpna Gupta, Ph.D., University of California

Miniaturized, Wireless Electronic, Optoelectronic and Microfluidic Systems for Small Animal Studies

John A Rogers, Ph.D., Northwestern University

Microglia-like Cell-Based Assay for Drug Discovery in SCD

Vivien Sheehan, M.D., Ph.D., Emory University School of Medicine

Quantifying and Treating SCD Pain Using qEEG and Transcranial Focused Ultrasound Neuromodulation

Bin He, Ph.D., Carnegie Mellon University

Development of qEEG Algorithms for Objective Pain Assessment

Jonathan Mille, M.S.E., Lead A.I. Software Engineer, PainQx

AI-aided Gait Analysis as an Indicator of Pain

Stacy Kiven, University of California

4:00 pm - 4:30 pm
Approaches to Effective Therapeutic Management of Pain for People With SCD

Wally Smith, M.D., Virginia Commonwealth University

4:30 pm - 5:00 pm
Pain Management in Adolescence and Pregnancy, Neonatal Abstinence Syndrome

Chair: Andra H. James, M.D., M.P.H., Duke University

Deva Sharma, M.D., M.S., Vanderbilt University Medical Center

Lydia Pecker, M.D., Johns Hopkins University

10:00 am - 10:05 am
Welcome and Announcements

10:05 am - 3:30 pm

10:05 am - 10:35 am
Ex-Vivo Perfusion of Human Spleens With Red Blood Cells from SCD Patients to Explore The Mechanisms Of Spleen-Related Complications

Abdoulaye Sissoko, Ph.D., University of Paris

Computational Investigation of How the Spleen Reshapes and Retains Young and Old Red Blood Cells and its Implications in SCD

He Li, Ph.D., Brown University

Zixiang Liu, Ph.D., Brown University

George Karniadakis, Ph.D., Brown University

10:35 am - 11:05 am
Clinical Microfluidic Biomarker Assays for Red Cell Health and Blood Rheology

Jane Little, M.D., Case Western University

11:05 am - 11:30 am
What’s New With Arginine Therapy in SCD

Claudia R. Morris, M.D., FAAP, Emory University School of Medicine and Children’s Health Care

11:30 am - 12:00 pm

12:00 pm - 12:30 pm
Painimation, a Novel Method for Assessing Pain in Sickle Cell

Charles Jonassaint, Ph.D., University of Pittsburgh

12:30 pm - 1:00 pm
The Role of Neural Mediated Vasoconstriction in the Pathophysiology of Sickle Vaso-Occlusive Crisis

Thomas D Coates, M.D., University of Southern California Keck School of Medicine

1:00 pm - 4:00 pm
The National Alliance of Sickle Cell Centers Symposium

National Alliance for Sickle Cell Centers Vision and Initiatives

Chair: Julie Kanter, M.D., University of Alabama, Birmingham

How Sickle Experts Define Comprehensive Care for Children

Deepa Manwani, M.D., Children's Hospital at Montefiore

Keynote – Understanding Quality Improvement: Cystic Fibrosis Model

Mike Powers, M.D.

GRNDaD and the Use of Big Data in SCD

Sophie Lanzkron, M.D., M.H.S., Johns Hopkins School of Medicine

Patient Reported Outcomes: How to Move Them into Routine Clinical Care

Marsha Treadwell, Ph.D., UCSF Benioff Children's Hospital

Using Surveillance Data to Demonstrate Where Sickle Expert Care is Needed

Susan Paulukonis, M.A., M.P.H., Public Health Institute

2:00 pm - 5:00 pm
Annual Sickle Cell Adult Provider Symposium

Chair: John Strouse M.D., Ph.D., Duke University School of Medicine

Co-Chair: Susanna Curtis, M.D., Ph.D., Montefiore Medical Center

Disease Modifying Therapy for Adults With Sickle Cell Disease: What and When to Choose

Susanna Curtis, M.D., Ph.D., Duke University School of Medicine

Best Practices in Current Therapeutic and Curative Options

Ross Fasano, M.D., Emory University

Sophie Lanzkron, M.D., Johns Hopkins University

Debates on New Therapeutic Agents: Which to Use and When

Marquita Nelson, M.D., Methodist University Hospital

Modupe Idowu, M.D., University of Texas Health Science Center at Houston

Fuad El-Rassi, M.D., Emory University

Foluso Ogunsile, M.D., University of Alabama, Birmingham

5:00 pm