Updated demographics categories to capture the true diversity of an international registry of rare disease patients

Nicole Kressin; Michael E. Shy; Tara Jones; Nidia Villalpando; Gita Ramdharry

doi:10.1177/26330040251359676

Back

Updated demographics categories to capture the true diversity of an international registry of rare disease patients

Journal article

Open access

Peer reviewed

Updated demographics categories to capture the true diversity of an international registry of rare disease patients

Nicole Kressin, Michael E. Shy, Tara Jones, Nidia Villalpando and Gita Ramdharry

Therapeutic advances in rare disease, Vol.6, pp.1-11

01/2025

DOI: 10.1177/26330040251359676

PMCID: PMC12317269

PMID: 40757058

Files and links (1)

url

https://doi.org/10.1177/26330040251359676View

Published (Version of record) Open Access

Abstract

New demographic categories could better reflect the diversity of rare disease patients worldwide The authors noticed that the race and ethnicity categories required for NIH-funded studies might not work well for participants living outside the U.S. To address this, they created new categories that include those used by other countries but can still be grouped to match the traditional NIH categories. These updated categories were first tested on a small group of patients enrolling in the Inherited Neuropathy Consortium. After adjustments, they were tested again using a survey sent to people registered in the Rare Disease Clinical Research Network contact registry. The updated categories revealed more diversity among respondents compared to the original categories. These new categories meet federal requirements for demographic data collection and provide better insights into diverse populations outside the U.S. This approach could help researchers address health disparities in clinical studies.

Details

Title: Subtitle: Updated demographics categories to capture the true diversity of an international registry of rare disease patients
Creators: Nicole Kressin - University of Iowa
Michael E. Shy - University of Iowa
Tara Jones - Cedars-Sinai Medical Center
Nidia Villalpando - University of Iowa
Gita Ramdharry - University College London
Resource Type: Journal article
Publication Details: Therapeutic advances in rare disease, Vol.6, pp.1-11
DOI: 10.1177/26330040251359676
PMID: 40757058
PMCID: PMC12317269
NLM abbreviation: Ther Adv Rare Dis
ISSN: 2633-0040
eISSN: 2633-0040
Language: English
Date published: 01/2025
Academic Unit: Neurology; Molecular Physiology and Biophysics; Iowa Neuroscience Institute
Record Identifier: 9984944726702771

Metrics

3 Record Views