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September 12, 2025

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

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Authors

VBVence L. BonhamMeharry Medical College KAKiana Amini ABAshley BuscettaNational Human Genome Research Institute

Discussion

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Implication

Deliberative engagement produced effective patient education materials for sickle cell disease gene therapy, indicating community involvement boosts education.

Key Points

Participants reported strengths and challenges in creating accessible education materials for sickle cell disease gene therapy.
The study involved a multi-disciplinary group including patients, advocates, and researchers, reflecting diverse perspectives and expertise.
Using mixed-methods analysis, the deliberative community engagement model aided in the development of patient education materials effectively.
Findings inform how community engagement can enhance understanding and accessibility of gene therapy information in diverse populations.

Cite This Study

Bonham et al. (2025) studied this question.

synapsesocial.com/papers/68d44c5531b076d99fa56400 https://doi.org/10.1159/000548133

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Implication

Deliberative engagement produced effective patient education materials for sickle cell disease gene therapy, indicating community involvement boosts education.

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

Discussion

Member takes

Implication

Key Points

Cite This Study

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

Discussion

Member takes

Implication

Key Points

Cite This Study

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