Library and Information Science Commons^™

Standardization Of Questions In Rare Disease Registries: The Prism Library Project, Rachel L. Richesson, Denise Shereff, James E. Andrews

School of Information Faculty Publications

Background: Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed structured research questions and relevant answer sets accompanying them. There are currently no clear standards or specifications for developing registry questions, and there are no banks of existing questions to support registry developers.

Objective: This paper introduces the [Rare Disease] PRISM (Patient Registry Item Specifications and Metadata for Rare Disease) project, a library of standardized …