About the Registry of Patient Registries (RoPR)

This system contains registry specific information intended to promote collaboration, reduce redundancy, and improve transparency among registry holders.

The RoPR data entry system allows for registry owners to provide information about the following:

  • Description - registry geography, title, and description
  • Classification and Purpose - the type of registry and its purpose
  • Contact and Conditions of Access - circumstances under which the registry can be contacted, and contact information for those interested in collaboration, participation and/or data access
  • Progress Reports - includes information about the growth of the registry and any relevant references to available progress reports
  • Related Information - links to relevant information available for the registry
  • Common Data Elements - condition or service area of interest and categories of interest (e.g., demographics, procedures, and treatments) for registry
  • Secondary IDs - unique identifiers assigned by other publicly available registries
  • Study Status - start/completion dates and recruitment status
  • Collaborators - organizations providing support (e.g., funding, design, implementation, data analysis, and reporting) to the registry
  • Study Design - observational study model, time perspective, Biospecimen retention, enrollment targets, number of groups/cohorts, and target follow-up duration
  • Study Outcome Measures - primary, secondary, and other outcome measures
  • Study Groups and Interventions - predefined participant groups to be studied and the interventions associated with each group
  • Study Eligibility - study population description, sampling method, gender, age limits, and other eligibility criteria
  • Public Health - acceptance of electronic public health data, public health measures supported, and providers served

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.

AHRQ Advancing Excellence in Health Care