| Source | Purpose and approach |
|---|---|
| Registry of Patient Registries (RoPR) | Used to identify any registries that self-identified as a registry using the ‘patient registry’ subtype selection for observational studies when registering in ClinicalTrials Specific search terms identified for each clinical area Applied inclusion/exclusion criteria |
National Institutes of Health (NIH) U.S. National Library of Medicine | Used to identify registries that use the term ‘registry’ but did not select the ‘patient registry’ subtype (possibly because they were entered prior to the introduction of that subtype in 2012) Specific search terms identified for each clinical area Applied inclusion/exclusion criteria Restricted to ‘observational study’ entries that use the term ‘registry’ in their title or description |
Physician Quality Reporting System Qualified Registries (PQRS) | Used 2016 list to identify registries that are qualified under Centers for Medicare & Medicaid Services (CMS) rules for measure submission. Applied inclusion/exclusion criteria |
Center for Drug Evaluation and Research (CDER) https://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/default.htm Center for Biologics Evaluation and Research (CBER) https://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CBER/ Center for Devices and Radiologic Health (CDRH) https://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDRH/ | CDER monitors drugs and over-the-counter products, CBER evaluates biological products, and CDRH monitors medical devices and provides accessible information for consumers and providers. Reviewed: Post-Marketing Requirements and Commitments database Post-Approval Studies (PASs) |
Patient-Centered Outcomes Research Institute (PCORI) | Reviewed-- Clinical Data Research Networks (CDRNs) Patient-Powered Research Networks (PPRNs) PCORI uses high-quality, evidence-based information to help make informed healthcare decisions |
NIH Reports and Health Services Research Projects in Progress (HSRProj) | Used to identify additional government-funded projects |
| Other Organizations | Websites of organizations that compile or list registries, such as the American Medical Association (AMA)’s National Quality Registry Network (NQRN). |
| Literature and website scans | Used PubMed, Google Scholar, and Google to: Identify registries not listed in other sources Identify publications or conference proceedings |
| Stakeholder and workgroup feedback | Ad hoc conversations to obtain feedback and recommendations with experts Reviewed registry list with workgroup participants to solicit additional registries |
From: Key Project Activities
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