It is imperative that patients with sickle cell disease who are considering a gene therapy clinical trial fully understand the meaning and limitations of an experimental treatment so they can make an informed decision on whether to participate. Patients need accessible, understandable and actionable educational materials to help them make such decisions.
The Democratizing Education for Sickle Cell Disease Gene Therapy project invited more than 50 stakeholders to participate in a series of workshops. These stakeholders represented the following groups: patients, parents of patients, health-professionals, community-based organizations, advocacy groups, industry leaders, government representatives and researchers.
The project group met over four days in both large and small group settings. Based on their expertise and role, participants were assigned to five educational focus areas:
Each group determined key recommendations and presented that information to the larger group for further discussion and deliberation.
The Democratizing Education Project welcomes your feedback about the sickle cell disease gene therapy resources. Please email your comments or questions to DemocratizingEd@mail.nih.gov.
These educational materials are for informational purposes only. They are meant to promote your general understanding of gene therapy for sickle cell disease. We encourage you to use these educational materials to talk with your healthcare provider or a clinical trial team.
Sickle Cell Reproductive Health Education Directive (SC RED) advocates for high quality sexual and reproductive health care for individuals living with all types of sickle cell disease
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