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Evelyn Pyper, MPH discusses how a patient-centered approach to real-world data collection and evidence generation can transform research in neurodegeneration. Neurodegenerative diseases often affect both motor and cognitive function, produce emotional and social changes, and require significant caregiver support, all while stretching across a fragmented healthcare ecosystem. Participatory research that directly obtains patient consent, empowers patients, and simplifies the task of linking multiple data sources, can lead to a more comprehensive capture of medical histories. This presentation briefly explores ways in which patient-centered research can improve understanding of disease diagnoses, symptomatology, and progression.

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