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Page 4 of 5 Lee. Vessel Plus 2022;6:7 https://dx.doi.org/10.20517/2574-1209.2021.31

ADDRESSING BARRIERS TO BLACK PATIENT ENGAGEMENT
At the end of 2020, Angioma Alliance’s BFHP transitioned its programs to the New Mexico Department of
Health, the University of New Mexico, and the New Mexico Chapter of Angioma Alliance. This transition
was intentional and allowed Angioma Alliance to begin a new special population outreach program targeted
at Black patients around the United States. Unlike the Common Hispanic Mutation in the Southwest and
[5]
the CCM2 Exon 2-10 Deletion among White families with origins in the Southeastern United States, there
is to our knowledge, no founder mutation or increased prevalence of the illness among Black Americans.
Nevertheless, surveying our major national clinical databases, we have found Black patients to be
significantly underrepresented. For example, in the Angioma Alliance patient registry, 16 of approximately
1500 registrants self-identified as African American (~1% of the cohort). In the United States, ~13% of the
population self-identify as Black. Additionally, these patients have, on average, higher Modified Rankin
Scores, indicating greater disability at the time of registration. Clinical research and clinical trials should
reflect the composition of the patient population and this cannot be the case with current database
demographics. In the last ten years, the number of druggable CCM targets has multiplied, increasing the
potential for multiple simultaneous clinical trials. In keeping with FDA’s guidance on enhancing the
diversity of clinical trial populations , Angioma Alliance would like each clinical trial cohort to reflect the
[6]
diversity of the CCM patient population. CCM patients require treatments that are shown to be safe and
effective for all. To achieve this, our outreach efforts need modification.

To this end, Angioma Alliance is launching another large-scale outreach effort. The organization plans to
create support groups and programming specific to Black patients, assist clinical researchers in analyzing
their cohorts for between-group differences based on race, partner with larger non-profit disease-focused
organizations to reduce healthcare disparities, and create a network of public hospital sister institutions that
will have the opportunity to access training and expertise at our CCM Centers of Excellence. The ultimate
goals are to develop a thriving, active community of engaged Black patients and families, improve care at
institutions that are most likely to see these patients, decrease under-representation in clinical databases and
in research participation, and disseminate information about our outreach model to other rare disease
organizations so that the 4.3 million Black Americans with rare diseases can be better served.

CONCLUSION
Patient advocacy organizations can serve the research community directly, but they also have a large role to
play in fostering a growing, engaged, well-characterized patient base to support clinical research including
clinical drug trials. Traditional medical model outreach may not be the best method to reach all
populations. Angioma Alliance has crafted targeted, culturally congruent outreach to improve the ability of
clinical researchers to recruit participants who reflect the demographics of the entire CCM patient
community.

DECLARATIONS
Authors’ contributions
The author contributed solely to the article.

Availability of data and materials
Not applicable.

Financial support and sponsorship
Cornelia Lee is supported by Julian Grace Foundation, Global Genes, and Con Alma Health Foundation.