Promoting the use of standard questions in patient registries and research: A library of questions related to rare diseases
✍ Scribed by Denise Shereff; James Andrews; Alice Graves; Rachel Richesson
- Publisher
- Wiley (John Wiley & Sons)
- Year
- 2011
- Tongue
- English
- Weight
- 592 KB
- Volume
- 48
- Category
- Article
- ISSN
- 0044-7870
No coin nor oath required. For personal study only.
✦ Synopsis
The Patient Registry Item Specifications and Metadata (PRISM) library was developed with funds from the American Recovery and Reinvestment Act (ARRA) with the primary purpose of supporting the use of standardized questions in rare disease patient registries. A patient registry is for a method of collecting, storing, retrieving and using a clearly defined set of data on identifiable individuals for a specified purpose. Standardization of patient registries can enable the sharing of health and patient data for optimal research capabilities. As the number of patient registries proliferates, there exists no single entity to drive the development of data collection, storage and retrieval standards. The PRISM library fills that void. Additionally, the PRISM library supports a bottom-up approach to standardization, and utilizes Dublin Core for indexing and, partnering with the College of American Pathologists, uses SNOMED CT to code clinical content. PRISM also supports apomediation, as well as the re-use of questions to promote standardization. The goal of PRISM is to reduce variation in registry questions used by the rare disease registry community and to support production of high quality, highly efficient patient registries. The standardization of patient registry questions can further serve to improve efficiencies and collaboration across the research and drug development communities.