National African American Multiple Sclerosis Registry: Advancing Equitable Care and Outcomes for African Americans with Multiple Sclerosis (4957)

Objective: To raise awareness about the mission, objectives, and design of the newly launched National African Americans with Multiple Sclerosis Registry (NAAMSR). Background: Historically, multiple sclerosis (MS) has been underdiagnosed among African Americans with MS (AAwMS). Recent evidence suggests that AAwMS have a different clinical presentation, increased disease incidence and burden, and worsened long-term outcomes versus Caucasians with MS. Due to the underrepresentation of AAwMS in clinical trials, there are limited data to make informed, generalizable conclusions about the natural history, prognosis, and therapeutic response in this population. The goals of the NAAMSR are to: i) expand evidence-based knowledge of MS and its management in African Americans; ii) educate AAwMS and increase their opportunities for clinical trial participation; and iii) engage in research that will benefit this underserved community. Design/Methods: Self-identifying AAwMS will be recruited via brochure distribution at healthcare facilities and print, broadcast, internet, and social media outreach. Educational outreach to AAwMS will also be prioritized. Participants will be asked to complete an extensive questionnaire on the NAAMSR website (www.naamsr.org) at registration and annually thereafter, providing information on demographic and socioeconomic status, timing of symptom onset and diagnosis, MS pattern, use of disease modifying therapies (DMTs), quality of life, disability status, and access to care. The registry was launched on September 1, 2020 with a target enrollment of 20,000–30,000 registrants in urban, suburban, and rural communities nationwide. Results: Among other measures, the registry will facilitate clinical trial recruitment and examine the impact of social determinants of health on access to care, timeliness of diagnosis, DMT initiation, and long-term outcomes; the potential effect of ethnicity on disease pattern and severity; and the relationship between disease severity and medication efficacy. Conclusions: The NAAMSR will provide a platform for addressing the critical and urgent health disparities experienced by AAwMS. Disclosure: Dr. Okai has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. Dr. Okai has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Celgene. Dr. Okai has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for EMD Serono. Dr. Okai has received personal compensation in the range of $5,000-$9,999 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 Novartis. 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 $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Biogen. Dr. Okai has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Celgene. Dr. Okai has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for EMD SERONO . Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Genentech. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Teva. Dr. Okai has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi Genzyme . Annette Howard has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi Genzyme. Annette Howard has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for EMD Serono. Annette Howard has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Bristol Myers Squibb. Annette Howard has received personal compensation in the range of $100,000-$499,999 for serving on a Speakers Bureau for Sanofi Genzyme. Annette Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD Serono. Annette Howard has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Bristol Myers Squibb. 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 Genzyme. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Abbvie. 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 Celgene/Bristol Myers Squibb. 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 Speakers Bureau for Biogen Idec. Dr. Williams has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Bristol Meyers Squibb. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Novartis Pharmaceuticals. 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 TEVA Neuroscience. 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 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. Brink has received personal compensation in the range of $500-$4,999 for serving as a Speaker, participant with Biogen. Dr. Chen has nothing to disclose. The institution of Ms. Stuchiner has received research support from Boehringer-Ingelheim. The institution of Dr. Baraban has received research support from Boehringer Ingelheim. Dr. Cohan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Cohan has received personal compensation in the range of $500-$4,999 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 $500-$4,999 for serving as a Consultant for Bristol Myers Squibb (Celgene). 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 $5,000-$9,999 for serving on a Speakers Bureau for sanofi genzyme. Dr. Cohan has received personal compensation in the range of $5,000-$9,999 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 $500-$4,999 for serving on a Speakers Bureau for Bristol Myers Squibb.