SCD Coalition Update – May 2023

Celebrate International Clinical Trials Day!

International Clinical Trials Day is observed on May 20th every year to mark the anniversary of the first randomized clinical study, which was conducted by James Lind in 1747. On Saturday, May 20, 2023, take a moment to celebrate the accomplishments of clinical research professionals in the sickle cell disease (SCD) field and learn about clinical research advancements made across the globe. Listen to this episode of the American Society of Hematology’s (ASH) podcast, Bringing Sickle Cell Disease to Life, entitled, “Finding a Purpose Through Sickle Cell Disease Research” to learn from experts Drs. Wally Smith and Betty Pace about their paths to conducting clinical research and training opportunities available to sickle cell researchers today.

SCDC “Global Access to Sickle Cell Research & Clinical Trials” Webinar Series Recordings

Last year, the Sickle Cell Disease Coalition (SCDC) hosted a webinar series on “Global Access to Sickle Cell Research & Clinical Trials,” which featured the efforts and perspectives of clinical researchers and institutions, and individuals living with SCD from around the world.

ASGCT Clinical Trials Finder

The American Society of Gene & Cell Therapy (ASGCT) website includes a clinical trials finder, which offers a curated list of applicable gene and cell therapy clinical trials for people living with diseases, like sickle cell. Individuals may filter their search by location, specific diagnosis, treatment modality, or enrollment status.

SCDAA Clinical Trials Finder

The Sickle Cell Disease Association of America (SCDAA) developed its Clinical Trial Finder in partnership with Forma Therapeutics. The Clinical Trials Finder is a centralized, simple to navigate resource that helps SCD warriors, their caregivers, and families find clinical trials.

Blood Articles on SCD

ASH published various articles on SCD in the flagship ‘Blood’ journal

SCD Legislation Reintroduced: “Van Hollen, Booker, Lee Introduce Bill to Improve Access to Care Sickle Cell Disease Patients” 

This month, U.S. Senators Chris Van Hollen (D-MD), Cory Booker (D-NJ), and Congresswoman Barbara Lee (D-CA) reintroduced the Sickle Cell Care Expansion Act, which, if passed, would strengthen the medical workforce that treats sickle cell and fund services for adults living with SCD.

UPCOMING EVENTS