The Community Input Panel helped support two-way dialogue between the Initiative and the patient community.
About the Community Input Panel (CIP)
The Cure Sickle Cell Initiative (CureSCI) is a collaborative, patient-focused research effort designed to find safe and effective genetic-based cures for sickle cell disease. An important part of CureSCi has been the inclusion and active participation of people living with SCD who help to guide research, as well as education and engagement efforts. The CIP, which was in place from 2020-2025, provided input on the direction of the Initiative, and members engaged in conversations with leadership to help communicate needs and identify opportunities in gene therapies for SCD.
Past Activities
The CIP provided input on the overall direction of CureSCi and discussed activities, including:
- Initiative events
- Educational materials
- Outreach materials
- Clinical trials plans
The CureSCi Patient Engagement Journey document details the involvement of those living with sickle cell disease since before the launch of the Initiative.
Former Members
CIP members included diverse representation including race, gender, age, geographic location, and their experiences. They were selected based on their knowledge and ability to represent the needs of the sickle cell patient and caregiver community. Members were engaged, involved, and offered a diversity of opinion and expertise.