NeuralCipher Research overview
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People from Black backgrounds are underrepresented in Parkinson's research, despite evidence of higher disease burden and risk of dementia. Greater understanding of the factors influencing participation in Parkinson's research can improve recruitment, quality and generalizability of both observational research studies and clinical trials. Through focus groups with 17 people with Parkinson's and carers from Black communities, we identified distrust in the research process, stigma of Parkinson's diagnosis, and accessibility as key barriers to research participation. Participants made recommendations including: raising awareness of Parkinson's and related research, involving community ambassadors, improving communication throughout the research process, and providing practical support.
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