Abstract Details

Title Clinical Trial Awareness in the Black Population from the National African Americans with Multiple Sclerosis Registry

Topic Health Care Disparities

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 4-007

Objective To assess access to MS care and opportunities to participate in clinical trials among NAAMSR participants.

Background Historically, the number of Black or African American people enrolled in clinical MS trials has been low. The National African Americans with Multiple Sclerosis Registry (NAAMSR) was created to identify barriers to care, reduce barriers to research participation and develop strategies to increase access to effective MS care.

Design/Methods As of April 2023, 601 Black Americans with MS had registered with NAAMSR. Participants received a survey collecting data on demographics, access to care, medication use, disability status, and quality of life. This study is a descriptive analysis of the first 277 completed survey responses received. We used Area codes from the U.S. Census to determine urban vs rural living domicile of participants.

Results

Of the 277 participants, 86.6% were female, the mean age was 47.5 (±11.2). Mean age at diagnosis was 38.2 (±9.8). Five percent were unsure of their disease pattern, 80.1% reported having relapsing MS, and 14.5% reported having progressive MS. The mean time from symptom onset to diagnosis was 3.6 (±5.1) years. Eighty-four percent (n=225) reported use of a disease modifying therapy (DMT), and 16% (n=43) were on steroids or no DMT.

Ninety-six percent of participants lived in an urban metropolitan area, and 4% lived in a small town or rural area. Of 97.8% who reported seeing a neurologist, 85.4% (n=228) saw an MS specialist. Although 4.4% were currently participating in an MS trial for MS, 80.1% reported they had never been asked to participate in a clinical trial.

Conclusions Eighty percent of participants had never been asked to participate in a clinical trial. This result highlights the need to proactively inform Black patients of clinical trials to achieve equity in clinical research and improve clinical outcomes in Black people.

Authors/Disclosures
Stanley L. Cohan, MD, PhD, FAAN PRESENTER	Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for AbbVie. Dr. Cohan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis. Dr. Cohan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche Genentech. Dr. Cohan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Bristol Myers Squibb (Celgene). Dr. Cohan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Icometrix. Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for EMD Serono. Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Biogen. Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for sanofi genzyme. Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Novartis. Dr. Cohan has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Roche Genentech. Dr. Cohan has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Bristol Myers Squibb. Dr. Cohan has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD Serono. Dr. Cohan has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Icometrix.
Annette Okai, MD, FAAN (North Texas Institute of Neurology and Headache)	Dr. Okai has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Genentech. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi Genzyme. Dr. Okai has received personal compensation in the range of $500-$4,999 for serving as a Consultant for TG Therapeutics. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for EMD Serono. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi Genzyme . The institution of Dr. Okai has received research support from Sanofi Genzyme. The institution of Dr. Okai has received research support from Roche Genetech. The institution of Dr. Okai has received research support from Novartis. The institution of Dr. Okai has received research support from EMD Serono. The institution of Dr. Okai has received research support from TG Therapeutics.
Tamela Stuchiner (Providence Brain and Spine Institute)	Ms. Stuchiner has nothing to disclose.
Mitzi J. Williams, MD, FAAN (Joi Life Wellness Group)	Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen Idec. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis Pharmaceuticals. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for EMD Serono. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi Genzyme. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for TG Therapeutics. Dr. Williams has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Bristol Myers Squibb. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Amgen. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for EMD Serono. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genzyme. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TG Therapeutics. Dr. Williams has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bristol Myers Squibb. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD Serono. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Genentech. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Amgen. Dr. Williams has received publishing royalties from a publication relating to health care. Dr. Williams has received publishing royalties from a publication relating to health care. Dr. Williams has a non-compensated relationship as a National Board Member with National MS Society that is relevant to AAN interests or activities. Dr. Williams has a non-compensated relationship as a Board Trustee with Consortium of MS Centers that is relevant to AAN interests or activities. Dr. Williams has a non-compensated relationship as a Board Chair with Joi Life Foundation that is relevant to AAN interests or activities.
Annette Howard (Annette M Howard, MD)	No disclosure on file
Weston Anderson	No disclosure on file
Chiayi Chen, PhD, RN	Dr. Chen has nothing to disclose.

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