Skip to main content
Article
[RD] PRISM Library: Patient Registry Item Specifications and Metadata for Rare Diseases
Journal of Library Metadata
  • Rachel L. Richesson, University of South Florida
  • Denise Shereff, University of South Florida
  • James E. Andrews, University of South Florida
Document Type
Article
Publication Date
1-1-2010
Keywords
  • patient registry,
  • metadata,
  • rare disease
Digital Object Identifier (DOI)
https://doi.org/10.1080/19386389.2010.506385
Abstract

Patient registries are important for understanding the causes and origins of rare diseases and estimating their impact; and they may prove critical developing new diagnostics and therapeutics. This paper introduces the [RD] PRISM resource , an NIH-funded project to develop a library of standardized question and answer sets to support rare disease research. The paper presents a project case-driven plan for creating a new registry using questions from an existing related registry, revising and expanding an existing registry, and showing interoperability of data collected from different registries and data sources. Each of the use cases involves the retrieval of indexed questions for re-use. Successful retrieval of questions can facilitate their re-use in registries, meaning new registries can be implemented more quickly, and the use of "standard" questions can be facilitated. The paper further discusses issues involved in encoding the sets with relevant data standards for interoperability and indexing encoded sets with metadata for optimal retrievability.

Rights Information
Default Rights Statement
Citation / Publisher Attribution

Journal of Library Metadata, v. 10, no. 2-3, p. 119-135

This is an Accepted Manuscript of an article published by Taylor & Francis in Journal of Library Metadata on 20 Oct 2010, available online: http://www.tandfonline.com/https://doi.org/10.1080/19386389.2010.506385

Citation Information
Rachel L. Richesson, Denise Shereff and James E. Andrews. "[RD] PRISM Library: Patient Registry Item Specifications and Metadata for Rare Diseases" Journal of Library Metadata Vol. 10 Iss. 2-3 (2010) p. 119 - 135
Available at: http://works.bepress.com/james_andrews/6/