September 12, 2025

Democratizing Education for Sickle Cell Disease Gene Therapy: A Community-Based Model for Creating Patient Education Materials.

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Community engagement reveals strengths and challenges in developing patient education materials for gene therapy.

Deliberative community engagement enhances the creation of patient education materials for sickle cell disease gene therapy, improving accessibility.
Survey data, focus groups, and recordings from three-time points show diverse participant experiences in the engagement model's process.
The project highlights strengths and challenges of using deliberative democracy principles to involve various stakeholders in education development.
Key focus areas include gene therapy types, social context, medical impact, and clinical trial participation, providing insights into patient needs.

Bonham et al. (2025) studied this question.

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