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

The updated categories allow researchers to provide a more inclusive race and ethnicity identification experience to participants. This may have implications for understanding differences in study populations that may translate to treatment response and has an overall aim to increase enrollment and adherence to observational research.

Authors

Gita Ramdharry (ORCID: https://orcid.org/0000-0001-9344-0301)
Nicole Kressin (ORCID: https://orcid.org/0009-0008-7070-8131)
Michael E. Shy (ORCID: https://orcid.org/0000-0001-8460-6971)
Tara Jones (ORCID: https://orcid.org/0000-0002-1865-9538)
Nidia Villalpando

Institutions

University of Iowa (US)
Cedars-Sinai Medical Center (US)
University College London (GB)

Publication Details

Journal: Therapeutic Advances in Rare Disease
Published: 2025-04-01
DOI: https://doi.org/10.1177/26330040251359676
Primary Topic: Genomics and Rare Diseases
Type: article
Field-Weighted Citation Impact: 0.00

Controls

|||

ALL TIME

JAN

FEB

MAR

APR

MAY

JUN

JUL

AUG

SEP

OCT

article

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

Gita Ramdharry, Nicole Kressin, Michael E. Shy, Tara Jones et al.

Apr 1, 2025

Therapeutic Advances in Rare Disease

Genomics and Rare Diseases

article

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

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

April 1, 2025article en

Abstract

The updated categories allow researchers to provide a more inclusive race and ethnicity identification experience to participants. This may have implications for understanding differences in study populations that may translate to treatment response and has an overall aim to increase enrollment and adherence to observational research.

Therapeutic Advances in Rare DiseaseVol. 6

University of Iowa (US), Cedars-Sinai Medical Center (US), University College London (GB)

Openalex Percentile: Top 79%

Genomics and Rare Diseases

DOI Open Access PDF OpenAlex

AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.

Updated demographics categories to capture the true diversity of an international registry of rare disease patients — Gita Ramdharry, Nicole Kressin, et al. · Therapeutic Advances in Rare Disease (2025) | TGRS Research Map | TGRS