For People with MS

Multiple sclerosis (MS) was once thought to be uncommon in people belonging to minority groups. But now we know that MS affects people of all races and ethnic backgrounds. MS may also affect people from certain backgrounds differently.

The more we know about the effects of MS in different people, the better scientists and doctors can keep all people with MS as healthy as possible. However, we know less about how MS affects members of minority groups such as African-Americans or Hispanics, because they have not always been represented in research studies.

The MS Minority Research Engagement Partnership Network is working to help understand how MS affects people of different ethnic and racial backgrounds, so that everyone can receive the best possible care. We are doing this by learning and addressing the reasons why people might not participate in medical research. We are also working to help scientists and doctors better understand how they can include people from different backgrounds in research activities.

Read on to learn more about MS in racial and ethnic minorities and how to make a difference by participating in MS research.

What is MS?

Multiple sclerosis (MS) is a chronic or long-lasting disease that affects the central nervous system, which are the nerves that send information to and from your brain and spinal cord around your body. When someone has MS, their immune system, which normally protects the body from disease, attacks the protective coating around the body’s own nerve fibers. The nerves themselves are also damaged in the process. This damage interrupts the flow of information through the nervous system, resulting in symptoms throughout the body.

MS symptoms often begin in people between the ages of 20 and 40 and can range from mild to very severe. Some common symptoms may include:

  • Vision problems, such as blurry or double vision
  • Hearing loss
  • Difficulty with speech
  • Numbness or tingling
  • Muscle weakness and trouble with balance and coordination
  • Difficulty concentrating or remembering things


The symptoms can get worse over time or may vary between more and less severe symptoms. There is no cure for MS, but there are treatments that help reduce existing symptoms, prevent new attacks (relapses) and slow the pace of disability. 


The symptoms of MS tend to be wide ranging and are often associated with other disorders. As a result, many people are not diagnosed with it right away.


People with MS-like symptoms are often diagnosed by a neurologist, a type of doctor who specializes in treating the brain and nervous system. Different tests are used to diagnose MS, including

  • Blood tests to rule out other diseases with similar symptoms
  • Physical tests of balance, muscle coordination, vision, and other functions
  • An MRI imaging test to look for lesions or damaged tissue in the brain
  • An analysis of the fluid that cushions your brain and spinal cord
  • Tests to measure electrical activity in your nervous system. 


 

For information on MS treatments, visit The National Multiple Sclerosis Society’s 
Treating MS section

 

Does MS Affect Minorities Differently?

For a long time, doctors thought MS most commonly affected non-Hispanic white people. Now we are learning that MS not only affects members of different minority groups, such as African Americans and Latinos, but it may also have different symptoms and get worse faster in people from different racial and ethnic backgrounds.

 

Recent studies of people in the U.S. military and members of the Kaiser Permanente health system indicate that the risk of developing MS may be highest in African Americans. At the same time, many studies have also shown that people from racial and ethnic minorities, particularly African Americans and Hispanics, may use or have  access to fewer health services, which can mean getting diagnosed later, missing out on treatments that could be helpful, and having worse health.

 

Studies of how MS affects minorities are only just beginning. As more people from different racial and ethnic groups become involved in medical research around MS, we will learn more about how the disease may differ among different groups. We may also be able to more quickly diagnose MS in people with symptoms suggestive of MS, and learn which treatments work best in which people.

MS Research – What It Is and Why It Is Important

Medical research takes many forms. It is used to learn about all aspects of health, from whether a drug is safe and effective to whether an educational brochure is useful and easy to understand. Research studies can take place at a clinic, at your doctor’s office, online or by phone, or in your own home. Here are some of the most common ways people can participate in medical research:

  • Clinical drug trials. A comparison of how a new drug, dose, or combination of doses works compared with other treatments.

  • Non-drug treatment trials. A study of whether treatments such as physical therapy, yoga, biofeedback, or other practices help reduce symptoms.

  • Biospecimen tests and biorepositories. Researchers collect and analyze small amounts of substances such as blood or saliva to learn more the biological traits of the disease. Sometimes these samples are frozen and stored in a “biorepository,” so that other researchers can examine them as well.

  • Surveys. A questionnaire you can fill out on paper, over the phone, or on the internet that may ask about your condition, your background, your activities to take care of your MS, or your thoughts and perceptions, to better understand how MS or a treatment affects you.

  • Journals and logs. An ongoing record of your activities or condition (such as hours of exercise or blood pressure level), which gives researchers a picture over time of your health and habits, as well as how a treatment affects you.

  • Brain training games. Activities done on the computer to test or improve certain functions like attention or mood.

  • Usability testing. Researchers watch how you use a website or product such as a brochure to see if it is easy to use and ask you questions about your reaction to it.

  • Interviews and focus groups. Researchers simply talk to your or bring a group of people together to ask questions about a topic they are studying, such as access to health care or experience with biofeedback. They may ask specific questions or just ask you to share your experiences.

  • Patient or consumer advocate. People with MS can take part in decision making around research by sharing their expertise on review boards and panels. These advisors help make decisions about funding, study design, and other aspects of research.

Learn more about clinical trials

What Should I Expect as a Research Participant?

If you choose to participate in a research study, you’ll want to know what to expect about the treatment you receive, the time and cost to you to participate, how you will benefit, and what might be the risks of participating. If the study is being conducted in a clinic, a member of the research team, usually a doctor, nurse, or study coordinator, will talk to you about the study and what to expect. The details of the study will be outlined in an informed consent form, which you will be asked to sign if you decide to participate in the study. Informed consent is not a contract, so you are free to withdraw from a study at any time. If the study is being conducted over the phone, on the internet, or by mail, you should still be provided with information about the study, but you may not have a conversation with the research team or be asked to sign an informed consent form.

Here are some of the important questions and topics you should know about.

  • Purpose of the study.

    • What is the specific goal of this study? What questions does the team hope to answer?

    • What happens to the information that is collected and how will it be used?

    • How is the study funded? Who is funding it? Does the researcher in charge work for the funder?

 

  • Treatments and participation.

    • What treatments or drugs will I receive?

    • Is there a chance I won’t receive the drug or treatment you will be studying?

    • What other tests will I have to undergo?

    • What happens if I want to stop participating in the study?

 

  • Study activities.

    • What activities, tests, or treatments will the study include?

    • What information will be collected?

    • Where will these be performed? Will I need to stay overnight in a clinic or hospital?

    • How often will I need to see or contact the research team?

 

  • Risks and benefits.

    • What are the short- and long-term risks of participating in this study?

    • What are the short- and long-term benefits?

    • How do these risks and benefits compare with my options for care outside of the study?

    • Who can see my personal information and how will it be used?

    • How will my confidential information and privacy be protected?

 

  • Effects on daily life and responsibilities.

    • How will taking part in this study affect my daily life? Will it affect my schedule?

    • Will it interfere with my ability to go to work as normal or hurt my ability to do my job?

    • Will I need to get child or elder care?

    • Will it affect transportation? For instance, will I have to arrange rides or take public transportation? Will I have to travel far?

 

  • Costs and payments.

    • What costs should I expect for medical care, tests, treatments, or other aspects of the study? What is covered by the study and what will I have to pay?

    • What costs should I expect for transportation, travel, hotel, and meals? Will any of these costs be paid for by the study?

    • Is there any compensation, such as a gift card or money, besides coverage of study costs, for participating? When would I receive it?

How are Research Participants’ Rights Protected?

When people take part in medical research, they undertake some risk of harm for the good of others. In response to serious abuses that took place in the past, ethical protections have been put in place to ensure that research participants are not exploited or put at undue risk. These protections ensure that participants are appropriately informed about what to expect and are given the choice to participate or not. They also require researchers to ensure that their studies treat individuals and groups fairly, and maximize the benefits to participants while minimizing the risks. Some specific ethical protections that have been put in place include the informed consent process described above, and the creation of ethics boards (Institutional Review Boards) that review research to make sure that the welfare, rights and privacy of participants are protected. Specific regulations are in place to protect the rights of vulnerable groups of people such as prisoners or children.

MS Studies Looking for Participants

Taking part in MS research studies is one way to give back to your community. The information learned through research studies may lead to better understanding of how MS affects individuals like you. It may also lead to better health care for people in your community. See below to find studies that are currently recruiting volunteers and talk to your health care provider about whether any of these or another study is right for you.

 

  • iConquerMS™

    iConquerMS™ is an online community of people with MS who share health information, connect with researchers, and participate in studies. Enrollment is open to anyone who wants to help shape and contribute to MS research.

 

  • The Multiple Sclerosis Genetics Project

    The University of California San Francisco is inviting African Americans to participate in a national study of the genes that affect the risk of MS. Participation involves providing information and medical records, and having blood drawn at a lab site near you.

 

  • National African Americans with MS Registry (NAAMSR)

    This registry aims to accurately estimate the number and geographic location of African American people with MS in the U.S., identify barriers to accessing care, and develop strategies to correct inequities of access.

 

  • Alliance for Research in Hispanic Multiple Sclerosis

    Collaborators in California and Florida are inviting Hispanic Americans to participate in a study about factors that affect MS risk and experience. Participation involves an office visit and donation of information and blood samples.

 

  • Study of Genetics and Culture in Hispanics/Latinos with MS

    Investigators in California, Florida, New Mexico, and Puerto Rico are inviting Hispanics/Latinos who have been diagnosed with MS within the last two years to participate in a study about the impact of genetics and culture on disease severity. Participants will have a clinic visit where they will fill out questionnaires, watch a short film about MS, and provide blood samples.

 

Genentech, the manufacturer of Ocrevus, is studying how this FDA-approved treatment affects the evolution of relapsing multiple sclerosis in Black/African American and Hispanic/Latino patients. Participants will receive infusions of Ocrevus and be monitored for one year. Information in Spanish can be found at https://chimesstudy.com/es/inicio.

 

 

    In addition to these studies, you can find many other research opportunities by visiting these sites:

     

     

    • Clinical Trials Search

      The Multiple Sclerosis Association of America, in partnership with a company called Antidote, hosts a clinical trial search tool on their website.

     

    • ClinicalTrials.gov

      You can search for MS research studies at ClinicalTrials.gov. This site contains information about clinical studies of human participants conducted around the world.

     

    • CenterWatch.com

      This website offers information on clinical trials for both patients and researchers, and puts out a variety of newsletters, books, and databases. You can search it for open MS clinical trials.

     

    • ResearchMatch.org

      This is a member organization that matches people who are looking for research studies related to their condition and researchers looking for study participants. It was developed by major universities across the U.S. and is free to join.

     

    Additional Resources

    For more information about clinical trials, as well as resources in English and Spanish, please visit our resource page For People with MS.

     
    MS Research Participation Survey

    We conducted a survey in 2017 to understand how people with MS from different backgrounds and races think about medical research. You can read a report  summarizing the results of this survey. If you have any questions about the survey or report, please send us an email.

    Learn More about MS, MS Research, and How to Get Involved in Research

    If you are interested in getting involved in MS research, there are many ways to find information. Start by talking to your health care provider about any clinical trials that may be appropriate for you. The government and several MS organizations also maintain lists of current trials to pursue.

    General Multiple Sclerosis Information

    Multiple Sclerosis Association of America (2016)

    A bilingual brochure on what is MS, who gets MS, symptoms of MS, how MS is diagnosed, disease course, and treatments. National Multiple Sclerosis Society (2015) (English and Spanish)

    Learn more about multiple sclerosis symptoms, diagnosis, treatment, and research. National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services (June 2012). (English and Spanish)

    MS in Minority Communities

    Vicky Uhland, Momentum Magazine (March 29, 2017)

    Read and watch videos about how MS affects African Americans and learn about genetics studies, video resources, and NMSS-sponsored African-American Education conferences that are planned for the coming year. National Multiple Sclerosis Society (2017)

    This brochure provides an overview of some of the clinical characteristics of MS and how it impacts African Americans differently. National Multiple Sclerosis Society (2015)

    A bilingual brochure on ancestry, culturally competent care, the importance of family and the stigma of illness in the Hispanic/Latino community. National Multiple Sclerosis Society (2013) (English and Spanish)

    Learn about MS and how it affects different ethnic and geographic populations. Multiple Sclerosis Association of America

    What You Need to Know About Clinical Trials

    National Institutes of Health, U.S. Department of Health and Human Services (reviewed January 18, 2017) (English and Spanish)

    ClinicalTrials.gov, a Service of the National Institutes of Health, U.S. Department of Health and Human Services (last reviewed January 2017)

    U.S. Food and Drug Administration, U.S. Department of Health and Human Services (January 18, 2017) (English and Spanish)

    U.S. Office for Human Research Protections, U.S. Department of Health and Human Services (last reviewed December 21, 2016)

    U.S. Food and Drug Administration, U.S. Department of Health and Human Services (January 18, 2016) (English and Spanish)

    Gary Cutter, Ph.D., and Inmaculada Aban, Ph.D. Multiple Sclerosis Association of America (2007)

    (patient brochure) Center for Information & Study on Clinical Research Participation

    If you participate in a clinical trial, use this guide to prepare your questions before you sign up. Center for Information & Study on Clinical Research Participation·

    Online & Telephone Support

    Visit this online discussion group for African Americans with MS and their families.

    Visit this online discussion group for people of Hispanic/Latino descent with MS and their families.

    Join this Spanish-speaking telephone based support group for people living with MS.

    Telephone Helplines

    • Multiple Sclerosis Association of America Helpline

    800-532-7667

    • Multiple Sclerosis Foundation

    888-MSFOCUS (673-6287) or support@msfocus.org

    • National Multiple Sclerosis Society

    800-FIGHT-MS (800-344-4867) or contactusNMSS@nmss.org

    • MS Views and News MS Navigator Social Work Helpline

    888-871-1664

    Where to Find More Information about MS and Research

    This independent website aims to provide African Americans with culturally accurate health information.

    CISCRP is a nonprofit organization dedicated to engaging the public and patients as partners in the clinical research process.

    MSAA is a national nonprofit organization dedicated to improving the lives of people with MS through support and direct services.

    The Multiple Sclerosis Foundation, also known as MS Focus, is a nonprofit organization that provides free services to address the needs of people with MS and their families.

    A not-for-profit news and information website designed to provide educational information about MS to the global MS community.

    NINDS, which is part of the National Institutes of Health leads and supports research to understand and reduce neurological disease.

    NMSS is a nonprofit organization dedicated to helping people with MS by funding research, advocating for change, educating professionals, and providing programs and services for people with MS and their families.

    Part of the National Institutes of Health, the NIMHD leads scientific research to improve health among minority populations by planning and coordinating health disparities research across the NIH.

     

     

    Información Acerca de la Esclerosis Múltiple en Español

    Información General Sobre la Esclerosis Múltiple

    Un folleto bilingüe sobre lo que es la esclerosis múltiple (EM), que hace la EM, los síntomas de la EM, cómo se diagnostica la EM, el curso de la enfermedad y los tratamientos. Sociedad Nacional de Esclerosis Múltiple (2015)

    Obtenga más información sobre los síntomas de la esclerosis múltiple, el diagnóstico, el tratamiento y la investigación. National Institutes of Health, U.S. Department of Health and Human Services (actualizada en Diciembre 20, 2016)

    La Sociedad Nacional de Esclerosis Múltiple ha desarrollado una sección de información, entrevistas con expertos y recursos para hispanohablantes.

    Esclerosis Múltiple en Comunidades Minoritarias

    Un folleto bilingüe sobre la ascendencia, la atención culturalmente, la importancia de la familia y el estigma de la enfermedad en la comunidad hispana / latina. Sociedad Nacional de Esclerosis Múltiple (2013)

    Información Necesaria Sobre Ensayos Clínicos

    National Institutes of Health, U.S. Department of Health and Human Services (actualizada en Abril de 2017)

    U.S. Food and Drug Administration, U.S. Department of Health and Human Services (actualizada en Febrero 25, 2016)

    U.S. Food and Drug Administration, U.S. Department of Health and Human Services (actualizada en Febrero 24, 2016)

    U.S. Food and Drug Administration, U.S. Department of Health and Human Services (actualizada en Agosto 15, 2014)

    Apoyo Telefónico

    Únase a este grupo de apoyo telefónico de habla hispana para personas que viven con Esclerosis Múltiple.

     

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