Evidence map›Paper›PMID 40877917›Full record

ArticleOrphanet journal of rare diseases2025

Assessing racial differences in North American hereditary hemorrhagic telangiectasia study recruitment and care.

Gabriella Scott, Ashlee Agundiz, Jeffrey Nelson, Steven Hetts, Marianne Clancy, Helen Kim, Marie E Faughnan, Brain Vascular Malformation Consortium HHT Investigator Group

Abstract read
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In one paragraph

Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Gabriella ScottToronto HHT Centre, Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael's Hospital, Toronto, ON, Canada.
Ashlee AgundizDepartment of Anesthesia and Perioperative Care, University of California, UCSF HHT Center of Excellence, San Francisco, San Francisco, CA, USA.
Jeffrey NelsonDepartment of Anesthesia and Perioperative Care, University of California, UCSF HHT Center of Excellence, San Francisco, San Francisco, CA, USA.
Steven HettsDepartment of Radiology, University of California, San Francisco, UCSF HHT Center of Excellence, San Francisco, CA, USA.
Marianne ClancyCure HHT, Monkton, MD, USA.
Helen KimToronto HHT Centre, Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael's Hospital, Toronto, ON, Canada.
Marie E FaughnanToronto HHT Centre, Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael's Hospital, Toronto, ON, Canada. marie.faughnan@unityhealth.to.ORCID http://orcid.org/0000-0002-3746-383X
Brain Vascular Malformation Consortium HHT Investigator Group

Funding

VCRC Administration UnitU54NS065705 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI KIM, HELEN · 2009 to 2023
$20.8M
NCATS NIH HHS National Center for Advancing Translational SciencesNINDS NIH HHS National Institute of Neurological Disorders and StrokeNINDS NIH HHS U54 NS065705Rare Diseases Clinical Research Network Rare Diseases Clinical Research Network
6 · The paper itself

Abstract

backgroundThere is increasing evidence of health outcome disparities due to inequitable healthcare. These inequities are likely compounded in rare disease care and research. We aimed to identify disparities in access to clinical care and research for patients with hereditary hemorrhagic telangiectasia (HHT) in North America.

methodsWe collected race data from the Toronto HHT Centre Brain Vascular Malformation Consortium (BVMC) recruits, the UCSF HHT Centre BVMC recruits, and the UCSF HHT Centre clinic patients, and compared proportions to local populations (2016 Canadian Census and 2010 San Francisco Bay Area Census).

resultsAt the UCSF HHT center, there was a significant association between race and BVMC enrollment status (p = 0.033). The proportion of White BVMC recruits was significantly higher than reported in the SF Bay Area Census data (p < 0.001). At the Toronto HHT centre the proportion of White BVMC recruits was significantly higher than reported in the Canadian Census provincial data (p < 0.001), and Toronto Metropolitan Area data (p < 0.001).

conclusionWe 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.

Indexed as

Race FactorsTelangiectasia, Hereditary HemorrhagicAdultFemaleHumansMaleMiddle AgedNorth AmericaOntarioSan Francisco

Identifiers

PMID40877917
PMCPMC12392467

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.