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Introduction Deliberative democracy is an inclusionary approach to reaching consensus decision-making through participative and representative engagement. The Democratizing Education for Sickle Cell Disease Gene Therapy Project used a deliberative community engagement model to partner with patient advocacy and research community members within the field of sickle cell disease (SCD) gene therapy to create new, accessible patient education materials (PEMs) about SCD gene therapy. Objective Develop PEMs for sickle cell disease gene therapy and study the process of deliberative community engaged research Methods A study of the experiences of a multi-disciplinary group of participants including patients, patient advocates, health professionals, gene therapy researchers, industry and government members using a deliberative community engagement model to develop new PEMs.
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