FOUNDATION FOR SARCOIDOSIS RESEARCH LAUNCHES CLINICAL TRIAL EQUITY INITIATIVE


FOUNDATION FOR SARCOIDOSIS RESEARCH LAUNCHES
CLINICAL TRIAL EQUITY INITIATIVE

CHICAGO, PRNewswire -- The Foundation for Sarcoidosis Research (FSR) is proud to announce the launch of the Ignore No More: ACTe Now! (Advance Clinical Trials for Equity in Sarcoidosis) campaign. The goals of this campaign are to increase representation of Black American sarcoidosis patients in clinical trials, raise awareness of disparities that exist in sarcoidosis, 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.

The time to ACTe is Now! Learn what you can do to support at www.stopsarcoidosis.org/ACTNow.

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. The survey is available now through November 30, and will culminate in a Congressional Briefing in April of 2023, Sarcoidosis Awareness Month.

Black Americans are 2.5 times more likely to have sarcoidosis and are 12 times more likely to die from sarcoidosis than White Americans. While Black Americans are disproportionately impacted by chronic illnesses and diseases across the spectrum,
they are significantly underrepresented in clinical trials and research. According to the FDA, only 7% of clinical trial participants, globally, and 16% domestically, are Black, while White participants represent 76% and 78% respectively.

 In 2021, FSR launched Phase I of the Ignore No More Campaign to raise awareness of the disproportionate impact sarcoidosis has on Black American women reaching over 500,000 individuals
through awareness events, media, and an educational public service announcement video featuring celebrity spokesperson, Jeryl Prescott Gallien. The campaign was featured in media
outlets such as The Roland Martin Show, The Tavis Smiley Show, USA Today and Yahoo! News. Phase II, ACTe Now!, sponsored by Boehringer Ingelheim, Kinevant Sciences, Mallinckrodt Pharmaceuticals, and Chan Zuckerberg Initiative, is the next
step in addressing health disparities in the sarcoidosis community, including Black American men.

 We are calling on all patients, caregivers, clinicians, researchers, and the wider community to support this campaign and raise awareness of the survey. The FSR ACTe Now! Social Media Toolkit and educational infographic are located on the campaign
website to make sharing messaging easy. FSR is also calling all providers, researchers, and clinicians to commit to having discussions with your patients about clinical trials and research participation.

There are more sarcoidosis clinical trials than ever before, so the time to ACTe is Now! Learn what you can do to support at www.stopsarcoidosis.org/ ACTNow. 

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