As the demand for data sharing and transparency continues to grow, programs that manage registries and biorepositories face increasing pressure to operate within the principles of open science while also... read more →
Thanks to Angela Dobes from the Crohn's & Colitis Foundation for starting a discussion about vendors used by HRA members for patient registries. The document linked above summarizes HRA member... read more →
The Registry & Biorepository and DEI Learning Communities hosted a joint webinar on Diversity in Registry and Biorepository Research To Advance Precision Medicine. We heard from Janeth Sanchez, Acting Director... read more →
During this community discussion, attendees utilized their collective expertise to share their lessons learned around biobank clinical site partnerships (compensation, sample and data collection). They also briefly discussed sustainability models,... read more →
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FDA RWD & RWE Draft Guidance Discussion In recent years, the U.S. Food and Drug Administration has released several draft guidance documents related to real-world data and evidence, including one...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 →