Bobby & Deanna Engram

At the Initiative, we believe clinical trial participation is one of the most important ways we can move towards a future without sickle cell disease.

Clinical trials are medical studies aimed at finding safe and effective ways to prevent, detect, or treat diseases.

Ways You Can Help
One of the most significant ways to support the Cure Sickle Cell Initiative is to learn more about the importance of clinical trials and to make an informed decision about participating, when trials are available. How to overcome barriers to progress, which includes exploring beliefs about clinical trials participation, is an important conversation in the sickle cell disease community.

Role of NIH and NHLBI
The National Institutes of Health (NIH) and the National Heart, Lung, and Blood Institute (NHLBI) are funding research and collaborating with researchers to move potential genetic therapies into clinical trials, with the participation of people living with sickle cell disease. The Cure Sickle Cell Initiative expects these trials to begin within five to 10 years. As studies meet the Food and Drug Administration (FDA) requirements regarding safety and efficacy, larger trials with more patients will be developed.

We encourage adults, as well as children, healthy volunteers, those living with sickle cell disease, and people from diverse ethnic and racial backgrounds to think about participating in trials.