Patient/Carepartner

For Black Individuals Living with MS

Six Reasons Your Enrollment Changes Everything

Your experience is data. Your story is evidence. And your participation moves the science forward in ways no lab ever could alone.

Finally Be Counted

For too long, Black people with MS have been invisible in the data that determines treatment standards. BICOMS puts you at the center — because the science cannot fix what it refuses to see.

Shape Research That Actually Serves You

Research has been done about communities like yours for decades — without you at the table. BICOMS is built differently. Your enrollment directly influences what gets studied, how it gets studied, and who benefits.

Break the Cycle of Misdiagnosis

Black patients are still being dismissed, delayed, and misdiagnosed because clinicians were never trained on what MS looks like in Black patients. Your data helps build that training — for every provider who comes after.

Access Better Opportunities

BICOMS members receive priority notification for clinical trials, early access to emerging research findings, and connection to a global provider network — opportunities most patients never know exist.

Join a Global Movement

You are not alone in this. Connect with a worldwide community of Black individuals navigating MS — sharing experience, knowledge, and collective power across every continent.

Protect Future Generations

The data you contribute today will shape diagnosis guidelines, treatment protocols, and care standards for the next generation of Black patients with MS. This is how the cycle breaks — permanently.

Takes less than 15 minutes. Secure. Confidential. Free for life.

Frequently Asked Questions

Whether you were recently diagnosed or have been living with MS for years, your experience and voice matter. The BICOMS Registry was built by and for Black communities to ensure our stories shape the future of MS research and care. Below are answers to the most common questions from patients and care partners who are considering joining.

What is the BICOMS Registry?

The Black International Coalition of Multiple Sclerosis Research (BICOMS) Registry is a patient-powered research registry dedicated to advancing our understanding of MS within Black communities worldwide. By collecting health information and lived experiences from Black individuals with MS and their care partners, BICOMS works to close critical gaps in MS research, improve access to care, and ensure that Black voices lead the science.

Who is eligible to join the BICOMS Registry?

The registry is currently open to Black and African American individuals who have been diagnosed with Multiple Sclerosis (MS), including all MS types — relapsing-remitting, secondary progressive, primary progressive, and clinically isolated syndrome. At this time, care partners are not able to enroll themselves, but they are welcome to assist their loved one through the enrollment process. We hope to expand participation to care partners in the future.

Can care partners enroll in the registry?

At this time, care partners are not able to enroll themselves in the BICOMS Registry. However, care partners play a vital role and are warmly encouraged to help their loved one with MS complete the enrollment process. We recognize how important the care partner perspective is and hope to open direct enrollment to care partners in the future — stay connected through our newsletter for updates.

Why is BICOMS specifically focused on Black individuals with MS?

Research has consistently shown that Black individuals with MS experience more aggressive disease progression, earlier disability, and greater barriers to care compared to other populations — yet they are severely underrepresented in clinical trials and research studies. BICOMS was founded to change that. By centering Black voices and experiences, we can generate the evidence needed to reduce disparities and improve outcomes for our community.

What information will I be asked to provide?

When you join, you will complete a series of online surveys covering topics such as your MS diagnosis and disease history, current symptoms and treatments, quality of life and daily functioning, access to care and healthcare experiences, and social and environmental factors that may affect your health. Surveys are designed to be completed at your own pace and typically take 20–40 minutes in total. Follow-up surveys may be sent periodically to track changes over time.

How is my personal information protected?

Your privacy is our top priority. Your personal identifying information (name, address, date of birth) is kept strictly confidential and is never shared in any reports or publications. Data shared with researchers is de-identified, meaning it cannot be traced back to you personally. Only the BICOMS research team has access to identifiable information, and all data is stored securely in compliance with federal privacy regulations (HIPAA).

Will my insurance company or employer be able to see my data?

No. Your participation in the BICOMS Registry will never be shared with your insurance company, employer, or any commercial entity. Your registry data is used solely for research purposes aimed at improving care for Black individuals with MS.

How do I join the BICOMS Registry?

Joining is simple and done entirely online. Visit the BICOMS website and click the “Join the Registry” button. You will be guided through an informed consent process, create a secure account, and begin your first survey. There is no in-person visit required.

Is there a cost to participate?

No. Participation in the BICOMS Registry is completely free. You will never be charged to join, complete surveys, or access educational materials provided through the registry.

How much time does participation require?

The initial enrollment and survey process takes approximately 20–40 minutes. After that, you may receive follow-up surveys periodically (e.g., every 6–12 months). You can complete surveys at any time that is convenient for you — from your computer, tablet, or smartphone.

Can I withdraw from the registry at any time?

Yes. Your participation is entirely voluntary. You may withdraw from the BICOMS Registry at any time, for any reason, without penalty or effect on your medical care. If you choose to withdraw, you may request that your data be removed from the registry.

Will I receive any benefits from participating?

While there is no direct payment for participation, registry members receive access to a monthly newsletter featuring MS education, information on clinical trials, treatment updates, and community resources. Most importantly, your participation directly contributes to research that can improve MS care for Black communities now and in the future.

Do I need a formal MS diagnosis to join?

Yes. Registry enrollment is currently limited to Black individuals with a diagnosis of MS confirmed by a neurologist or healthcare provider. If you are unsure whether your diagnosis qualifies, please contact our registry team for guidance. Care partners may assist their loved one in enrolling but cannot enroll as participants themselves at this time.

What if I have NMOSD or MOGAD?

We recognize that Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD) are related neurological conditions that disproportionately affect Black individuals and share some features with MS. At this time, the BICOMS Registry is enrolling individuals with an MS diagnosis only. However, we are actively planning to expand the registry to include individuals with NMOSD and MOGAD in the future. We encourage you to sign up for our newsletter to be notified when enrollment opens for these conditions.

Do I need to live in the United States to participate?

BICOMS is an international coalition. Black individuals with MS from across the globe are welcome to join the registry. Surveys are currently available in English; additional languages may be added over time.

Who can I contact if I have more questions?

If you have questions about the registry, eligibility, or how your data will be used, please email our registry team at info@bicoms.org. We are here to support you every step of the way.

Learn more and join the registry at bicomsregistry.org

For questions, contact us at info@bicoms.org

The Sooner We Reach Critical Mass, the Sooner We Force the System to Respond.

Every enrollment matters. Every provider who joins expands our reach. Every researcher who partners with us advances the evidence. This is how we change outcomes for Black people with MS — everywhere, for every generation that comes after us.