Improving Cell and Gene Therapy Education for Sickle Cell Disease

The Improving Cell and Gene Therapy (ICGT) Education for Sickle Cell Disease initiative is a research-driven, community-informed effort to expand access to accurate, ethical, and culturally responsive education around emerging transformative therapies. With gene and cell-based treatments for SCD at the forefront of medical innovation, our goal is to equip patients, families, and care providers with the tools and knowledge they need to make informed, empowered decisions.

Core Areas of Advisory Committee Contribution

Clinical Expertise & Peer Engagement

Identify and engage hematology/oncology specialists and transplant experts.
Support cross-disciplinary discussions around best practices for patient educatio

Content Review & Scientific Guidance

Evaluate educational materials for clinical accuracy, clarity, and alignment with current guidelines in curative SCD care.
Advise on key messages for provider and patient toolkits.

Ethical & Equity Considerations

Address barriers related to medical mistrust, informed consent, and access to care.
Promote inclusive and community-centered language and practices.

Share strategies to support children, patients, and caregivers navigating complex emotional and cognitive decisions around transformative therapies.
Inform content related to long-term effects, survivorship, and quality of life.

Industry & Funding Support

Provide strategic input on working with industry sponsors to ensure transparency and maintain the integrity of educational initiatives.
Collaborate on opportunities to secure funding for educational outreach and sustainability.

Psychosocial Strategy for Patients & Families