Partner Toolkit

Thank you for your interest in raising awareness about multiple sclerosis (MS) in your community. The MS Minority Research Engagement Toolkit is designed to help increase awareness of why it is so important for people from all different racial and ethnic backgrounds to take part in MS research studies and give them the confidence and knowledge to explore the available study opportunities.

Why Focus on MS Among Minorities? For a long time, doctors thought MS most commonly affected non-Hispanic white people. However, as more people are diagnosed and more research is done to see who is affected, we are learning that MS may actually occur more frequently in African-Americans than in other racial and ethnic groups. In addition, African Americans and Hispanics may be more severely affected by the disease. Genetic and biological differences as well as cultural norms and health system usage may all contribute to poorer MS outcomes in racial and ethnic minority groups.

Clinical research is paramount to the development of new treatments and interventions. However, medical studies have historically had underrepresented participation among women, racial and ethnic minorities, and children. There are many systemic, socio-economic, and historic contributors to this. In MS as in other diseases, African Americans and Hispanics make up a small fraction of people who take part in clinical trials even though they represent a quarter of the U.S. population. For example, in the Phase 3 trials for a recently-approved MS drug, over 90% of the combined participants were white, while the remaining 10% were African-American or another racial minority.

Without participation in research studies, it is impossible to fully understand important aspects of MS including which treatments work best in specific groups or individuals. The more we know about how MS affects minority communities, the better scientists and clinicians can improve diagnosis and tailor treatments to keep all people with MS as healthy as possible.

Download the Toolkit and individual pages as PDFs:

Get Involved: Suggested Activities for Your Community

Your support is critical to increasing minority representation in MS research and pushing the understanding of the disease forward.

The MS Minority Research Engagement Toolkit contains educational materials and resources to help people understand how clinical research can benefit individuals and communities, and why diversity in research is so important. You can use the toolkit’s educational and media tools on your website, in your communications to members, and at conferences and events – any place where you connect with people who have MS.

Help is needed to:

1) Increase awareness about MS and ensure people with MS have access to the care they need

2) Increase awareness about the importance of participating in clinical studies among health professionals, people with MS, and caregivers

Here are some ways to share the information in this toolkit:

Spread the word. Publish a newsletter article or blog post, or send an email alert using our sample text.
Start Sharing on Social. Share our sample social media posts through your network
Raise your voices. Maybe you work with people who have taken part in research already. Help and encourage them to share their experiences with their peers through a blog post, or an interview in writing or on camera. We hope you’ll share their stories with us!
Get personal. If your organization hosts meetings, conference calls, support groups, or other events, make MS research participation part of the discussion. Consider bringing in experts – local researchers, health care providers, and especially people with MS who have taken part in research – to talk about their experiences.
Learn together. Host or participate in an educational event. Hospitals, community centers, and churches often host health fairs and educational programs for their communities. Make minority participation in MS research part of the agenda at one of these events – or host a virtual event online or on a conference call.
Open the lab. Hold a “Meet a Researcher” open house at a university or hospital or online using social media and connect people with MS with researchers who are active in MS trials.

Join the Network: If you are interested in joining the network, please contact:

msminorityresearch@acceleratedcure.org or call 781-487-0099 to discuss collaboration.

Please access the resources in this toolkit to help engage others in your community.

Contact Us: Read more about the MS Minority Research Engagement Partnership Network or contact us at msminorityresearch@acceleratedcure.org.

Resources to Educate Patients and Caregivers

Understanding MS

Talking to Your Doctor about MS

MS Research: Making a Difference in MS by Contributing to Future Breakthroughs

About the MS Minority Research Engagement Partner Network

The MS Minority Research Engagement Partnership Network is a group dedicated to increasing research participation and inclusion among different ethnic and racial groups so that diagnosis and treatment can be best tailored to each group. We are doing this by understanding the barriers that may prevent people from different communities from participating in medical research, and by developing messages and materials that help to overcome these barriers. We are also working to help health care providers and researchers better understand how they can include MS patients from different backgrounds in research activities so that every community benefits from the work that is being done.

The Network is spearheaded by Accelerated Cure Project, a patient-founded, non-profit organization that focuses on meeting the research needs and interests of people with MS and research communities. Its members include the MS Association of America, National MS Society; MANA, a National Latina Organization, National Black Nurses Association, National Hispanic Medical Association, National Minority Quality Forum; patient advocates Anita Williams and Shawn Feliciano; clinicians/researchers Dr. Lilyana Amezcua, Dr. Mitzi Williams, Dr. Daniela Pimentel Maldonado, and Dr. April Moreno; Feinstein Kean Healthcare; Biogen; and Genentech. Funding is provided by a Eugene Washington PCORI Engagement Award made by the Patient-Centered Outcomes Research Institute (PCORI).

www.acceleratedcure.org

This resource may be freely shared with the public. We ask that you please acknowledge the source when sharing or duplicating contents with the following citation: MS Minority Research Network, Accelerated Cure Project. (2017). MS Minority Research Engagement Toolkit.