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.
In Journals
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.
Amezcua L, Smith JB, Gonzales EG, Haraszti S, Langer-Gould A. Neurology. 2020;94(14):e1548-e1556. doi:10.1212/WNL.0000000000009210
Caldito NG, Saidha S, Sotirchos ES, et al. Brain. 2018;141(11):3115-3129. doi:10.1093/brain/awy245
Amezcua L, Rivas E, Joseph S, Zhang J, Liu L. Neuroepidemiology. 2018;50(1-2):35-40. doi:10.1159/000484213
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)
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)
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)
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)
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)
Romana Hasnain-Wynia, Ph.D., Anne C. Beal, M.D., M.P.H. Clinical Therapeutics (May 2014)
Sheba George, Ph.D., Nelida Duran, R.D., M.S., and Keith Norris, M.D. American Journal of Public Health (February 2014)
Karen S. Kuffman, Susan dosReis, Melissa Ross, Beth Barnet, Eberechukwu Onukwugha, C. Daniel Mullins Journal of Comparative Effectiveness Research (May 2013)
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
The Multi-Regional Clinical Trials Center of Brigham & Women's Hospital and Harvard (2020)
U.S. Department of Health and Human Services, Food and Drug Administration (2019)
Karen M. Anderson, Steve Olson, Rapporteurs The National Academies Press (2016)
National Institute of Neurological Disorders and Stroke (2015)
Morbidity and Mortality Weekly Report (January 14, 2011)
Programs and Activities
In the News
Kaiser Health News (KHN) (March 2021)
Patient-Centered Outcomes Research Institute (PCORI) (April 2019)
Vicky Uhland, National MS Society Momentum Magazine (Winter 2017-2018)
Tom Dorsett, MedCity News (January 2017)
Janet Wells UCSF Magazine (Winter 2016)
Brian Krans Healthline (August 3, 2016)
Maxine Bookbinder Clinical Informatics News (March 31, 2016)
Robert M. Califf, MD FDA Voice (January 27, 2016)
Rae Ellen Bichell Healthshots: Health News from NPR (December 16, 2015)
John Lechleiter Forbes (April 9, 2014)
NIH Office of Communications and Public Liaison (August 18, 2011)
Dr. Danielle N. Lee Ebony (July 16, 2014)
Natalie McGill The Nation’s Health (September 2013)
David Satcher Washington Post (February 21, 2014)
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)
National MS Society (2012)
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)
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)
