Assessing racial differences in North American hereditary hemorrhagic telangiectasia study recruitment and care
We report preliminary evidence of racial differences in access to HHT care and research in North America. Our findings indicate a need for race data collection and reporting, as well as identification of barriers and potential solutions in HHT care and research.
Authors
- Marianne S. Clancy (ORCID: https://orcid.org/0000-0001-9394-9271)
- Marie E. Faughnan (ORCID: https://orcid.org/0000-0002-3746-383X)
- Jeffrey T. Nelson
- Steven W. Hetts (ORCID: https://orcid.org/0000-0001-5885-7259)
- Helen Kim (ORCID: https://orcid.org/0000-0002-1937-354X)
- G.M. Scott
- Ashlee Agundiz
Institutions
- St. Michael's Hospital (CA)
- University of California, San Francisco (US)
- St Michael's Hospital (GB)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-28
- DOI
- https://doi.org/10.1186/s13023-025-03883-1
- Primary Topic
- Vascular Anomalies and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Rare Diseases Clinical Research Network
- National Institute of Neurological Disorders and Stroke
- National Center for Advancing Translational Sciences