EDITSCD
Systemic Problem
Gene therapy and genome editing approaches for sickle cell disease require rigorous evaluation frameworks that go beyond clinical efficacy to assess equity, access, and long-term governance.
Existing Landscape
Gene editing trials are advancing rapidly but evaluation frameworks remain focused on safety and efficacy, with limited attention to health system integration and equity.
What We Build
EDITSCD develops evaluation frameworks for genome-editing approaches to sickle cell disease, with attention to equity, access, and governance implications.
Our Role
We contribute evaluation frameworks and governance analysis to the EDITSCD consortium.
Evaluation Strategy
We assess not only clinical outcomes but also equity of access, governance quality, and health system implications.
Partners
European Sickle Cell Federation
ESCF is a key partner for our work on sickle cell disease, including EDITSCD and participatory research initiatives
Opportunities
We welcome collaborations with researchers, patient organizations, and policymakers interested in equitable gene therapy governance.