Title: The use of SNOMED CT to support retrieval and re-use of Question and Answer Sets for patient registries

Authors: Rachel L. Richesson, Denise Shereff, Christine Spisla, Narciso Albarracin, Debra Konicek, James E. Andrews

Addresses: University of South Florida College of Medicine, 3650 Spectrum Blvd. Suite 100, Tampa, FL 33612, USA. ' University of South Florida College of Medicine, 3650 Spectrum Blvd. Suite 100, Tampa, FL 33612, USA. ' STS Division (formerly SNOMED Terminology Solutions), College of American Pathologists, 500 Lake Cook Road, Suite 550, Deerfield, Illinois 60015, USA. ' ONTOADAPTIVE, LLC, 1016 W. Jackson Blvd., Chicago, IL 60607, USA. ' STS Division (formerly SNOMED Terminology Solutions), College of American Pathologists, 500 Lake Cook Road, Suite 550, Deerfield, Illinois 60015, USA. ' School of Information, University of South Florida, Tampa, Florida, USA

Abstract: Patient registries are a valuable research tool for understanding disease and can support new therapies. Diverse registry models, sponsors, and data requirements complicate efforts for the standardisation of registry Questions And Answer Sets (QAS). Bottom-up standardisation can be achieved by facilitating the re-use of existing questions through the use of searchable metadata coded using controlled terminologies. This paper describes the Patient Registry Item Specifications and Metadata for Rare Diseases (PRISM) library of registry questions representing a variety of rare diseases. PRISM uses the Dublin Core (DC) and the Systematised Nomenclature of Medicine Clinical Terms (SNOMED CT).

Keywords: metadata; clinical research; questions; registry QAS; question and answer sets; library; standards; rare diseases; Dublin Core; SNOMED CT; controlled vocabularies; controlled terminologies; encoding; indexing; patient registries; PAG; patient advocacy groups; health advocacy organisations; standardisation; clinical terms; QAS retrieval; QAS re-use.

DOI: 10.1504/IJFIPM.2010.040214

International Journal of Functional Informatics and Personalised Medicine, 2010 Vol.3 No.4, pp.342 - 365

Published online: 21 May 2011 *

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