Registry of Patient Registries (RoPR)

In September 2010, the Agency for Healthcare Research and Quality (AHRQ) awarded Outcome a task order to design and develop a Registry of Patient Registries (RoPR) database. Read the press release.

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:

• Provide a searchable central listing of patient registries in the United States to enable interested parties to identify registries in a particular area

• Encourage and facilitate the use of common data elements and definitions in similar conditions – to improve opportunities for sharing, comparing, and linkage – through the listing and searching of such elements

• Provide a central repository of searchable summary results, including results for registries that have not published their findings in peer-reviewed literature;

• Offer researchers a search tool to locate existing data, from either ongoing studies or closed studies, to request for use in new studies

• Serve as a recruitment tool for researchers and patients interested in participating in patient registries

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 ropr@outcome.com.