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 →
Breakout Session: A Natural History of HRA & Patient Registries Informed by member and non-member experiences, challenges, questions, and accomplishments, this session will present and discuss organizations’ patient registries efforts.... read more →