Adaption of the OMOP CDM for Rare Diseases

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

Abstract

The OMOP Common Data Model (OMOP CDM) is an option to store patient data and to use these in an international context. Up to now, rare diseases can only be partly described in OMOP CDM. Therefore, it is necessary to investigate which special features in the context of rare diseases (e.g. terminologies) have to be considered, how these can be included in OMOP CDM and how physicians can use the data. An interdisciplinary team developed (1) a Transition Database for Rare Diseases by mapping Orpha Code, Alpha ID, SNOMED, ICD-10-GM, ICD-10-WHO and OMOP-conform concepts; and (2) a Rare Diseases Dashboard for physicians of a German Center of Rare Diseases by using methods of user-centered design. This demonstrated how OMOP CDM can be flexibly extended for different medical issues by using independent tools for mappings and visualization. Thereby, the adaption of OMOP CDM allows for international collaboration, enables (distributed) analysis of patient data and thus it can improve the care of people with rare diseases.

Details

Original languageEnglish
Pages (from-to)138-142
Number of pages5
JournalStudies in health technology and informatics
Volume281
Publication statusPublished - 27 May 2021
Peer-reviewedYes

External IDs

Scopus 85107238575
ORCID /0000-0002-5577-7760/work/153654410
ORCID /0000-0002-9888-8460/work/153655106

Keywords

Keywords

  • Databases, Factual, Delivery of Health Care, Humans, Rare Diseases, Systematized Nomenclature of Medicine