RARE-X Study Delivers Insights for Diversity, Equality, and Inclusion Programs

April 7, 2022

New RARE-X DEI report summarizes the diversity challenges facing rare disease communities and delivers recommendations for rare disease organizations

Washington, DC — April 7, 2022 — RARE-X, a nonprofit organization dedicated to enabling patient communities to easily collect, manage, and share their health data through best-in-class governance, standards, and technology, has published a new report reflective of the DEI challenges and opportunities facing the rare disease community. The report is the culmination of a nine-month project that included a literature review, surveys of patients and caregivers, focus groups, and individual interviews with the broader rare disease ecosystem.

“The goal of this study was to identify strategies that different organizations can use to ensure diversity, equity, and inclusion is built into their programs,” said Teneasha Washington, diversity, equity, and inclusion lead for RARE-X and author of the study. “The study also guided RARE-X’s approach to developing a data portal strategy and implementation that inherently incorporates evidence-based insights informed by various stakeholders on diversity, equity, and inclusion.”

As part of the study, a literature search suggested that research involving homogenous populations may form inaccurate conclusions. This can include the finding that drug outcomes may not apply to certain populations, insight into differences among minorities may be lacking, and recommendations can be inappropriate.

“There is a great need for people of different races, ethnicities, socioeconomic statuses, and from different geographical areas to be included in clinical trials to better understand the barriers they face in diagnosing and treating rare diseases,” the report said. “A lack of diversity among participants in clinical trials and healthcare providers adds additional layers of difficulty and opacity in diagnosing rare diseases.”

The results of the study are reinforced in a RARE-Xtra podcast featuring J.P. Sacksteder, senior director, Patient Advocacy Relations at Genentech, Nancy O’Donnell, director of outreach at Usher Syndrome Coalition, Teneasha Washington, diversity, equity, and inclusion lead for RARE-X, and host Daniel Levine.

In the podcast, Nancy O’Donnell highlights the importance of a DEI mindset to support the hearing and vision loss community. “When you think about access and accessibility in general, you’re dealing with many forms of communication,” said Nancy O’Donnell. “You want to make sure that your websites are accessible for health literacy and an understanding of each person’s disease progression. You want to make sure that any survey forms are accessible. You want to make sure that if people use sign language, or tactile sign language, or braille, or electronic forms, that they’re all accessible.”

“At Genentech, the Rare-X DEI Report is an important reminder of the need for inclusivity for data capture,” said J.P. Sacksteder. “It challenged us in two ways: First, it encouraged us to evaluate our ongoing external data partnerships and examine if the sources are truly representative. Second, it encourages us to look in the mirror and be reflective on how we approach data collection and ask ourselves if we are as inclusive as we need to be to serve all patients.”

RARE-X recognizes that these are genuine challenges facing patients and advocates impacted by one of the almost 11,000 known rare diseases.  As a result, RARE-X is building and structuring its platform with the ability to scale and automate the experience, ensuring that ALL rare disease patients can participate easily, and build research-ready, well-governed data collection programs. In addition, RARE-X works as a trusted partner rooted in patient advocacy that has their best interest at stake. For RARE-X, appropriate DEI program development equals improved accuracy of patient health data for research.

The complete RARE-X DEI study and podcast can be found on the Global Genes website.

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