Content area
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.
Details
Enrollments;
Datasets;
Demographics;
Rare diseases;
Brain research;
Hereditary hemorrhagic telangiectasia;
Census;
Ethnicity;
Confidence intervals;
Metropolitan areas;
Hispanic Americans;
Patients;
Data collection;
Minority & ethnic groups;
Hemorrhage;
Racial differences;
Native North Americans;
Hospitals;
Race;
Census of Population
1 Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael’s Hospital, Toronto HHT Centre, Toronto, Canada (GRID:grid.415502.7); University of Toronto, Division of Respirology, Department of Medicine, St. Michael’s Hospital, Toronto, Canada (GRID:grid.17063.33) (ISNI:0000 0001 2157 2938)
2 University of California, UCSF HHT Center of Excellence, Department of Anesthesia and Perioperative Care, San Francisco, San Francisco, USA (GRID:grid.266102.1) (ISNI:0000 0001 2297 6811)
3 University of California, San Francisco, UCSF HHT Center of Excellence, Department of Radiology, San Francisco, USA (GRID:grid.266102.1) (ISNI:0000 0001 2297 6811)
4 Cure HHT, Monkton, USA (GRID:grid.478713.e) (ISNI:0000 0004 5902 332X)
5 Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael’s Hospital, Toronto HHT Centre, Toronto, Canada (GRID:grid.415502.7); University of California, UCSF HHT Center of Excellence, Department of Anesthesia and Perioperative Care, San Francisco, San Francisco, USA (GRID:grid.266102.1) (ISNI:0000 0001 2297 6811)
6 Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael’s Hospital, Toronto HHT Centre, Toronto, Canada (GRID:grid.415502.7); University of Toronto, Division of Respirology, Department of Medicine, St. Michael’s Hospital, Toronto, Canada (GRID:grid.17063.33) (ISNI:0000 0001 2157 2938); St. Michael’s Hospital, Toronto, Canada (GRID:grid.415502.7)