The Community Input Panel was launched in 2020 to help 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 is the inclusion and active participation of people living with SCD who help to guide research, as well as education and engagement efforts. The CIP provides input on the direction of the Initiative, and members engage in conversations with leadership to help communicate needs and identify opportunities in genetic therapies for SCD.
The CIP meets regularly to share input on the overall direction of CureSCi and to discuss activities that are being developed and implemented, including:
- Initiative events
- Educational materials
- Outreach materials
- Clinical trials plans
CIP members are diverse in their representation including race, gender, age, geographic location, and their experiences. They are selected based on their knowledge and ability to represent the needs of the sickle cell patient and caregiver community. Members are engaged, involved, and offer a diversity of opinion and expertise.
CIP Member Spotlight
Ade Adeyokunnu, MBA
What is one piece of advice that you would give to someone caring for a person living with SCD?
For someone caring for a person with SCD, my advice would be to educate yourself about the disease, its symptoms, and treatment options. Being informed helps in providing compassionate and effective care. Also take time out for yourself, because being a caregiver can take its toll physically, as well as mentally.
Why is the Community Input Panel such an important component of the Cure Sickle Cell Initiative?
The CIP is an essential component of the Cure Sickle Cell Initiative as it ensures that the perspectives and needs of the SCD community are integrated into research and decision-making processes relating to curative therapies. It fosters collaboration and trust between researchers, healthcare providers, and patients affected by SCD.
What has been your most gratifying experience as a CIP member?
As a CIP member, the most gratifying experience has been seeing the direct impact of the community involvement on research and policy, such as our input into pivotal clinical trials and also authoring a white paper that addresses the impact of SCD on patients' and caregivers' mental health.
Clayton Andrews, LAPC
André Harris, MSW