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Developing an Open-access Repository of High-quality Digital Measurement Tools for Use in Parkinson’s Disease Research and Care

The Library of Digital Measurement Products

Study Rationale: This study will bring together leaders in Parkinson’s disease (PD) and digital health innovation and measurement to develop and maintain an open-access repository of high-quality digital clinical measures, measurement tools and datasets for use in PD research and clinical care. This effort will build upon proven successful collaborations between the Digital Medicine Society (DiMe) and both the Critical Path for Parkinson’s (CPP) and The Michael J. Fox Foundation (MJFF) to ​​build a living library of high-value digital solutions to support the PD research and care communities.

Hypothesis: We hypothesize that creation of an open access, living repository of high-quality digital measurement tools for use in PD research and care will drive the broad adoption of digital measures in these clinical contexts and speed the development of new, high-value digital solutions in PD where the library indicates gaps.

Study Design: DiMe will partner with CPP to create an initial catalog of high-quality digital measures, digital measurement products and datasets. DiMe will make quarterly updates to this content using a comprehensive, rigorous repeatable search strategy that will be published on the DiMe website and in the peer-reviewed literature. The library will be open access and optimized for use by PD clinical researchers and care providers. It will be accompanied by summary dashboards and reports of trends identified by regular benchmarking that will offer strategic and scientific insights to the PD clinical communities and the developers seeking to develop products to meet their needs.

Impact on Diagnosis/Treatment of Parkinson’s disease: Broad adoption of high-quality, fit-for-purpose digital measurement tools promises to speed the development of new PD therapies, improve access to PD trials and specialist care by supporting decentralized and virtual research and care models, support earlier diagnoses and improve outcomes through the identification of digital phenotypes.  

Next Steps for Development: This study will impact clinical trials and research within three months of the grant being awarded with the publication of the initial open-access library. The impact of this study will endure and increase over time as the library is maintained and expanded, including the publication of benchmarking data.


Researchers

  • Jessie Patricia Bakker, PhD

    Boston, MA United States


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