Patient- or Participant-Generated Registries | Effective Health Care Program

Patient- or Participant-Generated Registries | Effective Health Care Program

Registry of Patient Registries User's Guide 3rd Edition Addendum Now Available

The Registry of Patient Registries (RoPR) is a database of registry specific information intended to promote collaboration, reduce redundancy, and improve transparency. The Agency for Healthcare Research and Quality (AHRQ) has designed and deployed the RoPR system to complement ClinicalTrials.gov by providing additional registry-specific data elements. The research white papers below are included in the Addendum to Registries for Evaluating Patient Outcomes: A User’s Guide, Third Edition. 

Patient- or Participant-Generated Registries (Research White Paper, released March 5, 2018)

Multinational Registries: Challenges and Opportunities(Research White Paper, released March 5, 2018)

Managing Missing Data in Patient Registries(Research White Paper, released March 5, 2018)

Biorepositories(Research White Paper, released March 5, 2018)