Sickle Cell Disease Association of America to promote clinical trials

HANOVER, Md.—The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, formed the Sickle Cell Disease C.A.R.E.S. Consortium, an initiative of pharmaceutical companies united to promote clinical trial participation and education.

“We have an opportunity and a responsibility to change the perception of clinical trials and increase the participation of sickle cell patients in clinical trials,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “Together, we will collectively leverage our resources to educate and encourage more trial participation while providing opportunities and therefore better options for the treatment of sickle cell disease.”

C.A.R.E.S., which stands for Collaboration of Advocates for Research, Education and Science, consists of members Agios; Beam Therapeutics; Editas Medicine; Forma Therapeutics, a Novo Nordisk Company; Hemanext; Pfizer; Sanofi and Vertex Pharmaceuticals.

The Sickle Cell Disease C.A.R.E.S. Consortium will launch with an awareness campaign for the Sickle Cell Disease Association of America’s clinical trial finder. Available on the association’s website and mobile app, the trial finder is a centralized site to help people with sickle cell disease, their families and caregivers find clinical trials.

Clinical trials help pharmaceutical companies collect data about the effectiveness and safety of sickle cell disease treatments and can provide participants with new treatments before they become widely available. Participants can use the clinical trial finder to search for sickle cell disease-focused clinical trials by keyword, location, study type and phase, all listed in one place. The Sickle Cell Disease Association of America and Forma Therapeutics partnered to develop the trial finder in 2021.

The Sickle Cell Disease C.A.R.E.S. Consortium’s awareness campaign will use stories, videos, infographics, testimonials, public relations and marketing to spotlight the clinical trial finder as well as debunk myths about clinical research and spark conversations about trial participation.

Sickle cell disease is an inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists.

Sickle Cell Disease Association of America advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. (www.sicklecelldisease.org)