DEVELOPMENT OF A NEW SYSTEM FOR REGISTRATION OF PATIENT REGISTRIES
Author(s)
Gliklich R1, Levy D1, Campion DM1, Leavy MB1, Karl J1, Berliner E2, Khurana L1, Hossfeld W11Outcome, A Quintiles Company, Cambridge, MA, USA, 2Agency for Healthcare Research and Quality (AHRQ), Rockville, MD, USA
Presentation Documents
OBJECTIVES: Patient registries are an important tool for clinical research, but there is no central database designed specifically to list patient registries. A searchable public database that is designed specifically to provide information about patient registries would support research collaborations, reduce redundancies, encourage the efficient use of resources, and improve transparency in observational clinical research. The goal of this project, funded by the Agency for Healthcare Research and Quality, is to design and develop a Registry of Patient Registries (RoPR) system that meets the needs of a diverse set of stakeholders. METHODS: Stakeholders from a broad range of organizations and with varying levels of familiarity with patient registries were identified and invited to participate in a series of meetings to gather and refine the RoPR system requirements. Requirements were also revised through public comment periods and usability testing. RESULTS: Over 320 individuals participated in RoPR requirements gathering activities. Participants represented funding agencies (n=48), government regulatory or public health agencies (n=13), industry (n=78), journal editors (n=6), patient/consumers (n=30), payers (n=8), providers or physician associations (n=49), researchers (n=79), and other (n=21). Based on stakeholder feedback, it was determined that the RoPR will be integrated with ClinicalTrials.gov and will collect information on registry purpose, objectives, data collection, recruitment and follow-up, analysis plans, quality procedures, and interest in collaboration and/or data sharing opportunities. CONCLUSIONS: The RoPR, which launches in September 2012, will be a publically available, searchable website designed specifically for listing patient registries. The information collected in the RoPR will enable RoPR users to identify registries in which they may wish to participate or that may be suitable for collaborative projects, such as data linkage or embedded studies. By incorporating stakeholder feedback throughout the design and development process, it is hoped that the RoPR will meet the needs of multiple, diverse stakeholder groups.
Conference/Value in Health Info
2012-06, ISPOR 2012, Washington, D.C., USA
Value in Health, Vol. 15, No. 4 (June 2012)
Code
PHP78
Topic
Study Approaches
Topic Subcategory
Registries
Disease
Multiple Diseases