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... read more →
In the August meeting of the Registry and Biorepository learning community, we heard from an expert on considerations for international research for patient registries, including approaches to handle regional differences... read more →
FDA RWD & RWE Draft Guidance Discussion In recent years, the U.S. Food and Drug Administration has released several draft guidance documents related to real-world data and evidence, including one... read more →
Topic: Advocating for your Registry/Biorepository with your Board Description: We all have (or may have to in the future) needed to justify the cost and strategy involved in our registry/biorepository... read more →
Dear Registry and Biorepository Working Group members, This group has truly grown over the past few years. To mark the end of 2022, we had an open mic discussion around... read more →
Registries serve many purposes to meet the needs of patient advocacy organizations. The first half of the call featured an invited speaker to discuss an Across Healthcare registry platform, Matrix... read more →
Hi all, DTRF is trying to increase the diversity within our natural history study. I'm interested if anyone has any ideas on improving diversity in an NHS or if anyone... read more →
The Registry and Biorepository Working Group hosted a presentation by Dr. Stephen Rosenfeld on a new model of ethical review. The “Research Ethics Review Board” is a system of nonprofit,... read more →
Agenda items covered during the August meeting of the Working Group: Snapshot of Registry and Biorepository Status and Capabilities Survey Results Business Plan Development Purpose and Role of Business Plan... read more →
The cochairs presented the results of a precall survey to gauge topic interest and get a sense of where HRA members are with respect to registries and biorepositories. The powerpoint... read more →