Minority under-representation in research continues to be a major barrier to the availability of treatment options for rare diseases like thalassemia and sickle cell disease (SCD). It goes without saying that minorities are historically under-represented and under-studied in clinical research studies, and past experiences have worsened feelings of distrust toward study participation. To address distrust toward clinical research within the thalassemia and SCD communities, Forma Therapeutics has made a concerted effort to be transparent about our drug development process by engaging in the following actions:
- Active listening and acknowledgement of the expressed questions, concerns, and fears regarding clinical research and participation.
- Understanding and empowerment of the communities to identify their unmet treatment needs and access to research opportunities.
- Collaboration with the communities on best practices to establish relationships and trust between the community and researchers.
- Ongoing education regarding clinical research studies and safety.