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Background <p>There 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.</p> Methods <p>We 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).</p> Results <p>At the UCSF HHT center, there was a significant association between race and BVMC enrollment status (<i>p</i> = 0.033). The proportion of White BVMC recruits was significantly higher than reported in the SF Bay Area Census data (<i>p</i> &lt; 0.001). At the Toronto HHT centre the proportion of White BVMC recruits was significantly higher than reported in the Canadian Census provincial data (<i>p</i> &lt; 0.001), and Toronto Metropolitan Area data (<i>p</i> &lt; 0.001).</p> Conclusion <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年8月28日

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  • Gabriella Scott,
  • Ashlee Agundiz,
  • Jeffrey Nelson,
  • Steven Hetts,
  • Marianne Clancy,
  • Helen Kim,
  • Marie E. Faughnan

摘要

Background

There 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.

Methods

We 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).

Results

At 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).

Conclusion

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.