Welcome to the SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium!

The mission of this initiative is to raise awareness about the importance of clinical trials and why it’s beneficial for sickle cell warriors to participate in them. The Sickle Cell Disease Association of America, along with our strategic partners, joined together to educate and encourage more trial participation while providing opportunities and therefore better options for the treatment of sickle cell disease. Click on the logos below to learn more about our partners.

Olivia’s Journey

NEW: Learn more about clinical trials by joining Olivia on her journey! Click here to download a printable file.

Click here to download the brochure.

The Clinical Trial Finder

Created in partnership with Forma Therapeutics. our Clinical Trial Finder is a centralized, simple-to-navigate resource that helps people with sickle cell disease, their families and caregivers find clinical trials. Clinical trials help pharmaceutical companies and researchers develop new sickle cell treatments. Your participation helps guide these breakthroughs and also gives you access to these new treatments before they are available to the public. Use the tool below to search for trials by keyword, location, study type and phase – now listed in one place. Visit the Clinical Trial Finder today.

Clinical Trial FAQs

What is a clinical trial?

Clinical trials are used to test the safety and effectiveness of drugs and devices. Usually, they are sponsored by pharmaceutical companies and conducted by research teams that include doctors and other medical professionals.

How is a clinical trial conducted? 

Trials are typically conducted in four phases:

  • During phase one, healthy people are given the medication to test if the ingestion of the pill or treatment has any adverse side effects.
  • Phases two and three dive deeper into the safety, effectiveness and dosage of the medication. After these stages, the FDA will approve the drug or device.
  • Phase four examines new uses for previously approved treatments.

How are clinical trials regulated and approved?

All the phases in clinical trials are governed by strict protocols and overseen by many regulatory bodies, from the Food and Drug Administration (FDA) to small Institutional Review Boards (IRBs). IRBs are a group of independent medical experts, ethicists and lay people. Researchers report periodically to the IRB to share updates on the trial including contact with patients, the tests conducted and if any serious side effects have been reported. IRBs are accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP). Source.

What are the benefits to participating in a clinical trial? 

Clinical trials allow participants to try new medications before they are widely available to the public. Participants play an important role in developing these therapies and widening our understanding of how to treat SCD.

How do I find a clinical trial near me? 

Visit our Clinical Trial Finder, created in partnership with Forma Therapeutics.