Minority Health Hub

Research and Reports on Minority Participation in Clinical Trials and MS in Minority Communities:

The Partnership Network is collecting articles, reports, and news about MS in minority communities, minority participation in research and in the research sciences, ongoing projects, and patient information for minority audiences. We hope you find these resources useful. If you know of any additional resources that could be shared here, please email us at msminorityresearch@acceleratedcure.org.

Toolkits Developed by the MS Minority Research Engagement Partnership Network

Patient Recruitment Toolkit for Research Professionals

Patient Recruitment Toolkit for Health Care Professionals

In Journals

Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups

Pimentel Maldonado, D; Moreno, A; Williams, M; Amezcua, L; Feliciano, S; Williams, A; Machemer, D; Livingston, T; LaRocque, M; Glim, M; Schmidt, H. Int J MS Care (2021). doi:10.7224/1537-2073.2019-131.

Race, ethnicity, and cognition in persons newly diagnosed with multiple sclerosis

Amezcua L, Smith JB, Gonzales EG, Haraszti S, Langer-Gould A. Neurology. 2020;94(14):e1548-e1556. doi:10.1212/WNL.0000000000009210

Brain and retinal atrophy in African-Americans versus Caucasian-Americans with multiple sclerosis: a longitudinal study

Caldito NG, Saidha S, Sotirchos ES, et al. Brain. 2018;141(11):3115-3129. doi:10.1093/brain/awy245

Multiple Sclerosis Mortality by Race/Ethnicity, Age, Sex, and Time Period in the United States, 1999-2015

Amezcua L, Rivas E, Joseph S, Zhang J, Liu L. Neuroepidemiology. 2018;50(1-2):35-40. doi:10.1159/000484213

Native ancestry is associated with optic neuritis and age of onset in hispanics with multiple sclerosis

Lilyana Amezcua, Ashley H. Beecham, Silvia R. Delgado, Angel Chinea, Margaret Burnett, Clara Patricia Manrique, Refujia Gomez, Manuel Comabella, Xavier Montalban, Melissa Ortega, Leticia Tornes, Brett T. Lund, Talat Islam, David Conti, Jorge R. Oksenberg, Jacob L. McCauley. Annals of Clinical and Translational Neurology (September 2018)

Hispanic Americans and African Americans with multiple sclerosis have more severe disease course than Caucasian Americans

Rachel E Ventura, Ariel O Antezana, Tamar Bacon, Ilya Kister. Multiple Sclerosis Journal (November 2016)

Comparing two sampling methods to engage hard-to-reach communities in research priority setting

Melissa A. Valerio, Natalia Rodriguez, Paula Winkler, Jaime Lopez, Meagen Dennison, Yuanyuan Liang, Barbara J. Turner. BMC Medical Research Methodology (October 2016)

The Significant Impact of Education, Poverty, and Race on Internet-Based Research Participant Engagement

Sarah M. Hartz, M.D., Ph.D., Tiffany Quan, Abiye Ibiebele, Sherri L. Fisher, M.S., Emily Olfson, M.D., Ph.D., Patricia Salyer, M.Ed., Laura J. Bierut, M.D. Genetics in Medicine (July 2016)

Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled

Sam S. Oh, Joshua Galanter, Neeta Thakur, Maria Pino-Yanes, Nicolas E. Barcelo, Marquitta J. White, Danielle M. de Bruin, Ruth M. Greenblatt, Kirsten Bibbins-Domingo, Alan H. B. Wu, Luisa N. Borrell, Chris Gunter, Neil R. Powe, Esteban G. Burchard PLOS: Medicine (December 15, 2015)

Multiple Sclerosis in US Minority Populations: Clinical Practice Insights

Omar Khan, M.D., Mitzi J. Williams, M.D., Lilyana Amezcua, M.D., Adil Javed, M.D., Ph.D., Kristin E. Larsen, Ph.D., Jennifer M. Smrtka, N.P. Neurology: Clinical Practice (April 2015)

Role of the Patient-Centered Outcomes Research Institute in Addressing Disparities and Engaging Patients in Clinical Research

Romana Hasnain-Wynia, Ph.D., Anne C. Beal, M.D., M.P.H. Clinical Therapeutics (May 2014)

A Systematic Review of Barriers and Facilitators to Minority Research Participation Among African Americans, Latinos, Asian Americans, and Pacific Islanders

Sheba George, Ph.D., Nelida Duran, R.D., M.S., and Keith Norris, M.D. American Journal of Public Health (February 2014)

Engaging Hard-to-Reach Patients in Patient-Centered Outcomes Research

Karen S. Kuffman, Susan dosReis, Melissa Ross, Beth Barnet, Eberechukwu Onukwugha, C. Daniel Mullins Journal of Comparative Effectiveness Research (May 2013)

The Project IMPACT Experience to Date: Increasing Minority Participation and Awareness of Clinical Trials

James H. Powell, M.D., Yolanda Fleming, Cheryl Lynn Walker-McGill, M.D., M.B.A., Michael Lenoir, M.D. Journal of the National Medical Association (February 2008)

Reports, Proceedings & Guidance

Achieving Diversity, Inclusion, and Equity in Clinical Research

The Multi-Regional Clinical Trials Center of Brigham & Women’s Hospital and Harvard (2020)

Enhancing the Diversity of Clinical Trial Populations – Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry

U.S. Department of Health and Human Services, Food and Drug Administration (2019)

Strategies for Ensuring Diversity, Inclusion, and Meaningful Participation in Clinical Trials: Proceedings of a Workshop (2016)

Karen M. Anderson, Steve Olson, Rapporteurs The National Academies Press (2016)

NINDS Inclusion of Women and Minorities in Research Report

National Institute of Neurological Disorders and Stroke (2015)

CDC Health Disparities and Inequalities Report — United States, 2011

Morbidity and Mortality Weekly Report (January 14, 2011)

Programs and Activities

“I’m In”: A Campaign to increase diversity in clinical trials

In the News

Stop Blaming Tuskegee, Critics Say. It’s Not an ‘Excuse’ for Current Medical Racism.

Kaiser Health News (KHN) (March 2021)

Expanding the Multiple Sclerosis Research Toolbox: A PCORI Engagement Award explores new avenues for increasing minority community participation in research.

Patient-Centered Outcomes Research Institute (PCORI) (April 2019)

On the rise: Diagnosis of MS is increasing among Latinos and Hispanics, and as awareness grows, treatment is improving.

Vicky Uhland, National MS Society Momentum Magazine (Winter 2017-2018)

Diversity in clinical trials: An issue that we can no longer ignore

Tom Dorsett, MedCity News (January 2017)

White Wash: Biomedical research doesn’t reflect the diversity of the American population

Janet Wells UCSF Magazine (Winter 2016)

Underserved Populations Still Lacking in Clinical Trials

Brian Krans Healthline (August 3, 2016)

The Diversity Problem: Making Clinical Trials Work for Everyone

Maxine Bookbinder Clinical Informatics News (March 31, 2016)

2016: The Year of Diversity in Clinical Trials

Robert M. Califf, MD FDA Voice (January 27, 2016)

Clinical Trials Still Don’t Reflect the Diversity of America

Rae Ellen Bichell Healthshots: Health News from NPR (December 16, 2015)

Closing the Diversity Gap In Clinical Trials

John Lechleiter Forbes (April 9, 2014)

News Release. NIH-commissioned study identifies gaps in NIH funding success rates for black researchers

NIH Office of Communications and Public Liaison (August 18, 2011)

Will Black People Ever Trust Clinical Trials?

Dr. Danielle N. Lee Ebony (July 16, 2014)

As Hispanics Lag in Clinical Trials, Health Researchers Take Action: Outreach Expands

Natalie McGill The Nation’s Health (September 2013)

More African Americans Need to Participate in Clinical Trials

David Satcher Washington Post (February 21, 2014)

New Poll Shows Minority Populations Support Clinical Trials to Improve Health of Others but Participation Remains Low Among African-Americans, Hispanics, and Asians

Research!America (July 31, 2013)

Multimedia

Personal Story of Living with MS: Maria Reyes Velarde (5:25)

National MS Society (2015) (Spanish)

Personal Story of Living with MS: Angel Munoz (4:02)

National MS Society (2015) (Spanish)

Living with Multiple Sclerosis – African American Perspectives

National MS Society (2012)

MS and African Americans: Reasons for Hope (Dr. Mary Hughes & Dr. Walter Royal)

A discussion about the importance of African Americans to participate in clinical trials and more research that targets African American patients with MS as reasons for hope (8:22) National MS Society (2011)

MS and African Americans: Diagnosis and Clinical Courses (Dr. Mary Hughes & Dr. Walter Royal)

A discussion about the unique clinical characteristics of MS and Africans Americans, the importance of establishing a relationship with your physician, and the stigma of disease in the African American community (11:17) National MS Society (2011)