December Registry and Biorepository Community Call [December 7, 2023]
In the December Registry and Biorepository community call, we shared details from two programs on prioritizing research questions and use cases of Registry data. IBD Plexus talked about their process of aligning programmatic support with the research questions they hope to solve. The PKD Foundation shared details of a recent Data Prioritization Workshop where they identified top research questions for their disease space and highlighted where their data may partially or fully answer them. We then closed out the year with a discussion of 2024 meeting topic planning.