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DuchenneConnect Project

As part of PCORnet, Geisinger researchers are partnering with Parent Project Muscular Dystrophy (PPMD), a parent-led foundation that funds DuchenneConnect, a patient-report registry for people with Duchenne and Becker muscular dystrophies. DuchenneConnect is a model for rare-disease registries, and researchers are looking at how to integrate information from electronic health records (EHR) to reduce burdens on registrants, allow evaluation of the accuracy of patient-reported outcomes and improve the standardization of registry items to include data resulting from ongoing research and patient care. Geisinger is also working with PPMD to develop an online consenting model that allows sharing of patient-entered data and EHR data. Geisinger will serve as the Institutional Review Board for the project.