About Us

The Sickle Cell Disease Study, an initiative led by St. Jude Children’s Research Hospital, shares whole genome sequencing data and clinical data with research and clinical communities. Our goal is to promote global collaborative efforts to identify genetic modifiers of sickle cell disease complications, improve clinical management for patients, and develop more effective treatments.

Data may be requested through St. Jude Cloud, a data-sharing resource for the global research community. St. Jude Cloud offers next-generation sequencing data, analysis and visualization tools for pediatric cancer, sickle cell and other life-threatening diseases. Visit St. Jude Cloud »

Why genomics for sickle cell?

Each year, an estimated 300,000 babies are born with sickle cell disease, which is caused by mutations affecting the HBB gene. The resulting mutant sickle hemoglobin (HbS) causes a chronic and debilitating disease with a high risk of early mortality and recurrent episodes of acute severe pain, chronic pain, cerebrovascular events and progressive organ damage.

Genetic modifiers are known to play critical roles in influencing disease severity, treatment response and morbidity and mortality among patients with sickle cell disease. However, many of these modifiers are poorly characterized or remain to be identified. Whole genome sequencing, coupled with longitudinal clinical follow-up of a large cohort, represents a powerful approach to identifying genetic modifiers of sickle cell disease, elucidating their contributions, and using the information to guide patient care and management.

Learn about our cohorts »

Map of Participating Institutions

Interactive map of institutions that have provided DNA from individuals with sickle cell disease for whole genome sequencing. Click on an institution for more information.

Who we are

Collaboration is essential for advancing progress in understanding and treating sickle cell disease. This initiative is a collaborative effort to analyze data from multiple participating hospitals and medical centers including:

  • St. Jude Children’s Research Hospital, Memphis, TN
  • Baylor College of Medicine, Houston, TX
  • Methodist University Hospital, Memphis, TN
  • Novant Health Hemby Children’s Hospital, Charlotte, NC
  • OSF Healthcare Children’s Hospital of Illinois/ University of Illinois Collage of Medicine, Peoria, IL
  • Our Lady of the Lake Children’s Hospital, Baton Rouge, LA

How to cite this resource

When publishing manuscripts utilizing data or information from this resource, please cite the St. Jude Children’s Research Hospital Sickle Cell Disease Study and include the URL: https://sickle-cell.stjude.cloud.

Data Access and Interactive Visualization of Whole Genome Sequence of Sickle Cell Patients within the St. Jude Cloud. Lance E. Palmer*, Xin Zhou*, Clay McLeod*, Evadnie Rampersaud, Jeremie H. Estepp, Xing Tang, Jian Wang, Edgar Sioson, J. Robert Michael, Kirby Birch, Jason R Hodges, Martha Villavicencio, Michael Rusch, Scott Newman, Heather Mulder, John Easton, Keith Perry, James R. Downing, Jane S. Hankins, Gang Wu#, Jinghui Zhang# and Mitchell J. Weiss#. Blood 2018 132:723; http://www.bloodjournal.org/content/132/Suppl_1/723

Contact us

We welcome your questions and comments as we continue to develop this community resource. Please contact us at support@stjude.cloud. You may also contact us if you are interested in exploring individual-level data.