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The Foundation for Sarcoidosis Research (FSR) announced the launch of the Ignore No More: ACTe Now! (Advance Clinical Trials for Equity in Sarcoidosis) campaign.
The campaign aims to increase the representation of Black American sarcoidosis patients in clinical trials and raise awareness of disparities in sarcoidosis. The campaign also seeks to identify the challenges and barriers that contribute to lower participation by Black Americans in clinical trials and to provide recommendations that foster a more inclusive approach to recruiting patients for clinical trials and research.
Sarcoidosis is a rare inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. There is no known cure and very limited treatments. The disease affects Black Americans at a higher rate and often yields poorer outcomes for the community.
Black Americans have a hospitalization rate nine times higher than white Americans. They are also 12 times more likely to die from sarcoidosis and at a younger age than their white counterparts.
To ensure Black American sarcoidosis patients are at the forefront of this discussion, FSR collaborated with sarcoidosis experts and patients, known as Patient and Clinical Advisory Committees, to create a survey to provide a platform for Black Americans to share their experiences and insights.
Black Americans at least 18 years of age and older, who live in the U.S., are encouraged to take the survey at www.stopsarcoidosis.org/ACTNow to help inform recommendations for improving care and increasing representation in clinical trials.
“It is imperative to increase representation of Black Americans in clinical trials and research efforts in order to close the gap in care and improve patient outcomes for Black Americans with sarcoidosis,” said Mary McGowan, Chief Executive Officer for FSR. “Ignore No More: ACTe Now! will focus on identifying the barriers and growing representation of Black Americans in clinical trials to provide more comprehensive data on their experiences, leading to more effective protocols, treatments, and equitable outcomes. We believe the learnings from this survey will lead to increased enrollment of Black Americans in clinical trials for sarcoidosis, as well as other chronic illnesses more broadly.”
The survey is available now through November 30, 2022, and will conclude in a Congressional Briefing in April of 2023, Sarcoidosis Awareness Month.