Registry of Patient Registries (RoPR)
Registry of Patient Registries (RoPR) Now Available Online
The Registry of Patient Registries (RoPR) launched on December 1, 2012 and is available online at https://patientregistry.ahrq.gov. Sponsored by the Agency for Healthcare Research and Quality (AHRQ), the RoPR is a database of existing patient registries that was designed with extensive stakeholder participation to promote collaboration, reduce redundancy, and improve transparency in registry-based research.
Registry sponsors may now list their registries. For more information, please see the following resources:
About the RoPR
Patient registries are increasingly being used to support a wide range of clinical studies. While clinical trials must be registered in ClinicalTrials.gov, there is no such mandate for observational studies. The goal of the RoPR database is to ensure registries are used in the most efficient manner and to encourage collaboration between patients and consumers, healthcare providers, researchers, research funding organizations, public health organizations, private health plans, employers, public insurance programs, journal editors, and pharmaceutical and device manufacturers. This project is being funded by the American Recovery and Reinvestment Act (ARRA), which is an economic stimulus package that was enacted by the 111th United States Congress in February 2009.
The main objectives of the RoPR database are to:
To learn more, please contact us at firstname.lastname@example.org.
AHRQ Registries Handbook: 3rd Edition
This AHRQ task order also includes the development of the third edition of the guide, "Registries for Evaluating Patient Outcomes: A User’s Guide,” a Federal publication that provides information on designing, implementing, and evaluating patient registries. The third edition will provide more timely information regarding new methodological, legal, and operational challenges and advances.
This project is scheduled to be completed by September 2013. For more information, please contact us at email@example.com.