AHRQ plans registry of patient registries

Govhealthit:  Mary Mosquera – February 22, 2012.

The Agency for Healthcare Research and Quality wants to develop a searchable Registry of Patient Registries, which are databases that track the experience of individuals with diseases and conditions, to encourage collaboration and information sharing.

The registry will catalog patient registries in a model similar tohttp://clinicaltrials.gov/ “>ClinicalTrials.gov, which lists trials of new therapies for research but does not require listing of patient long-term observational studies. By aligning with ClinicalTrials.gov, the new registry will reduce duplication and foster transparency.

Patient registries may be designed for various purposes, such as to observe the natural history of disease, examine comparative effectiveness or fulfill post-approval drug approval commitments, according to AHRQ in a Feb. 22 announcement in the preview section of the Federal Register. The public can comment on the proposal for 60 days. Read More