What Are Patient Registries for MS?

Research and Science

January 31, 2025

Alex Derencz

A stethoscope on a laptop. — Patient registries give researchers a deeper understanding of MS, which they hope to build on in the future. Image: iStock

the Northern American Research Committee on Multiple Sclerosis (NARCOMS) and iConquerMS .More than ever before, the research community is invested in understanding what it’s like to live with MS or care for someone with it, says Sara Loud, chief executive officer of Accelerated Cure, the non-profit organization that oversees the iConquerMS registry. Researchers can gain that understanding by utilizing registries such as iConquerMS and NARCOMS, where patients are at the center, she adds.“We’re seeing the [research] environment change,” Loud says. “Not only do we want to just incorporate the patient voice at certain time points, we want to start the conversation with them. We want them at every step.”Loud says registries give people living with MS a chance to help drive research forward and shape the landscape of future studies. Researchers use the data they receive to enhance their knowledge of the disease, which can help:

Find possible causes
Discover new treatments
Improve clinical care and quality of life for those affected

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The National Multiple Sclerosis Society is leading the unified global effort to accelerate the most promising cures for multiple sclerosis. People living with MS are at the center of this effort. They hold the keys to the answers researchers around the world are searching for and can help unlock those answers by joining a patient registry.Patient registries are databases that collect information from people with specific conditions or diseases, including MS, such as disease history, current medications and exercise habits, diet, and other lifestyle choices. Two patient registries enrolling people living with MS are the Northern American Research Committee on Multiple Sclerosis (NARCOMS) and iConquerMS .More than ever before, the research community is invested in understanding what it’s like to live with MS or care for someone with it, says Sara Loud, chief executive officer of Accelerated Cure, the non-profit organization that oversees the iConquerMS registry. Researchers can gain that understanding by utilizing registries such as iConquerMS and NARCOMS, where patients are at the center, she adds.“We’re seeing the [research] environment change,” Loud says. “Not only do we want to just incorporate the patient voice at certain time points, we want to start the conversation with them. We want them at every step.”Loud says registries give people living with MS a chance to help drive research forward and shape the landscape of future studies. Researchers use the data they receive to enhance their knowledge of the disease, which can help:

Find possible causes
Discover new treatments
Improve clinical care and quality of life for those affected

Find possible causes
Discover new treatments
Improve clinical care and quality of life for those affected

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Find possible causes
Discover new treatments
Improve clinical care and quality of life for those affected

How Registries Have Impacted MS Research

study published in 2024 used the NARCOMS registry to take a closer look at women’s health in MS.Researchers found that most studies focused on topics such as pregnancy and sexual dysfunction. However, very few studies addressed menopause, contraception (preventing pregnancy) and gynecologic cancers or screenings for the disease. Because of these findings, researchers will take a closer look at their research priorities in women’s health in MS.Participation from people living with MS also helps researchers frame the questions that they need to be asking, Salter says. “There’s sometimes a disconnect between what researchers are interested in and what patients really want to see happen.”In 2021, researchers used the iConquerMS registry to see the effects of the COVID-19 vaccine on people living with MS. Scientists were able to see the most common side effects people experienced and if their disease-modifying therapy (DMT) influenced their reaction. The results support the safety of the vaccine for people living with MS." c-nmssatomrichtext_nmssatomrichtext-host="">

Dr. Amber Salter, an associate professor of biostatistics at UT Southwestern, leads the data coordinating center for NARCOMS. Her mother lived with MS and, before she passed away, felt compelled to make a difference for everyone affected by MS. She did that by joining the NARCOMS Registry.“She had a lot of disability,” Salter says. “But it was something she was able to do to give back.”In addition to giving people living with MS a chance to leave their mark on the MS movement, Salter says patient registries help fill researchers’ critical gaps regarding the disease. For example, a study published in 2024 used the NARCOMS registry to take a closer look at women’s health in MS.Researchers found that most studies focused on topics such as pregnancy and sexual dysfunction. However, very few studies addressed menopause, contraception (preventing pregnancy) and gynecologic cancers or screenings for the disease. Because of these findings, researchers will take a closer look at their research priorities in women’s health in MS.Participation from people living with MS also helps researchers frame the questions that they need to be asking, Salter says. “There’s sometimes a disconnect between what researchers are interested in and what patients really want to see happen.”In 2021, researchers used the iConquerMS registry to see the effects of the COVID-19 vaccine on people living with MS. Scientists were able to see the most common side effects people experienced and if their disease-modifying therapy (DMT) influenced their reaction. The results support the safety of the vaccine for people living with MS.

What Happens After Joining a Registry

employment?

Does fatigue impact your ability to have a social life?

You are also asked to update your personal information as it relates to MS, such as new symptoms, relapses and medication changes.If you are eligible for a clinical trial or research study, registry representatives will contact you. But you are not required to participate. Before participating in a clinical trial, talk with your healthcare provider about possible risks so you can make an informed decision.“Participating in these registries empowers us to complete studies that we would not otherwise be able to finish,” Bebo says. “What’s more, it empowers people with MS – it gives them a voice in the search for MS cures.”And one of the ways people living with MS can use their voice in a registry is by asking questions that are important to them.For example:

As a person gets older, do their MS symptoms worsen or decrease?
Do specialized diets, such as low-carb and gluten-free ones, impact MS symptoms?
Can activities like listening to music or doing art projects affect your wellness?

“For me, research for all is the goal so that every person impacted by MS can participate in research at the level of their choosing and that the evidence that’s generated reflects the entire continuum of people who are affected by this disease,” Loud says." c-nmssatomrichtext_nmssatomrichtext-host="">

If you decide to join a registry like iConquerMS or NARCOMS with the intention of participating in research, you’ll first provide some baseline information about your MS, such as your diagnosis date, symptoms and if you take any DMTs.Then you’ll receive a couple of brief surveys throughout the year. Past surveys have asked participants questions such as:

When choosing a DMT, how important are factors such as maintaining cognitive function and an improved quality of life?
Has MS changed your level of employment?
Does fatigue impact your ability to have a social life?

As a person gets older, do their MS symptoms worsen or decrease?
Do specialized diets, such as low-carb and gluten-free ones, impact MS symptoms?
Can activities like listening to music or doing art projects affect your wellness?

employment?

Does fatigue impact your ability to have a social life?

As a person gets older, do their MS symptoms worsen or decrease?
Do specialized diets, such as low-carb and gluten-free ones, impact MS symptoms?
Can activities like listening to music or doing art projects affect your wellness?

When choosing a DMT, how important are factors such as maintaining cognitive function and an improved quality of life?
Has MS changed your level of employment?
Does fatigue impact your ability to have a social life?

As a person gets older, do their MS symptoms worsen or decrease?
Do specialized diets, such as low-carb and gluten-free ones, impact MS symptoms?
Can activities like listening to music or doing art projects affect your wellness?

website

View the measures taken to protect your information

Choose which registration type you are interested in

Fill out the informed consent agreement

Provide your email address

Fill out general information about your disease history

You’ll be asked to update your information every 6 months

Be on the lookout for surveys, research updates and participation opportunities

Ask research questions that matter to you

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iConquerMS

Visit their website
- View the measures taken to protect your information
Choose which registration type you are interested in
Fill out the informed consent agreement
Provide your email address
Fill out general information about your disease history
- You’ll be asked to update your information every 6 months
Be on the lookout for surveys, research updates and participation opportunities
Ask research questions that matter to you

website

View the measures taken to protect your information

Choose which registration type you are interested in

Fill out the informed consent agreement

Provide your email address

Fill out general information about your disease history

You’ll be asked to update your information every 6 months

Be on the lookout for surveys, research updates and participation opportunities

Ask research questions that matter to you

" c-nmssatomrichtext_nmssatomrichtext-host="">

iConquerMS

Visit their website
- View the measures taken to protect your information
Choose which registration type you are interested in
Fill out the informed consent agreement
Provide your email address
Fill out general information about your disease history
- You’ll be asked to update your information every 6 months
Be on the lookout for surveys, research updates and participation opportunities
Ask research questions that matter to you

enroll online

You can also request a paper copy of the enrollment form via email (msregistry@narcoms.org).

View the measures taken to protect your information

Complete the enrollment form

Fill out surveys twice a year (April and October)

Update the information on your condition
Ask research questions that are important to you

Be on the lookout for research updates and participation opportunities

For more ways you can contribute to MS research, check out our research studies page." c-nmssatomrichtext_nmssatomrichtext-host="">

NARCOMS

Visit their website to enroll online
You can also request a paper copy of the enrollment form via email (msregistry@narcoms.org).
- View the measures taken to protect your information
Complete the enrollment form
Fill out surveys twice a year (April and October)
- Update the information on your condition
- Ask research questions that are important to you
Be on the lookout for research updates and participation opportunities

For more ways you can contribute to MS research, check out our research studies page.

A screenshot of the NARCOMS homepage. — With more than 40,000 members across the U.S., NARCOMS aims to enhance collaboration between people living with MS, researchers and healthcare providers.

enroll online

You can also request a paper copy of the enrollment form via email (msregistry@narcoms.org).

View the measures taken to protect your information

Complete the enrollment form

Fill out surveys twice a year (April and October)

Update the information on your condition
Ask research questions that are important to you

Be on the lookout for research updates and participation opportunities

For more ways you can contribute to MS research, check out our research studies page." c-nmssatomrichtext_nmssatomrichtext-host="">

NARCOMS

Visit their website to enroll online
You can also request a paper copy of the enrollment form via email (msregistry@narcoms.org).
- View the measures taken to protect your information
Complete the enrollment form
Fill out surveys twice a year (April and October)
- Update the information on your condition
- Ask research questions that are important to you
Be on the lookout for research updates and participation opportunities

For more ways you can contribute to MS research, check out our research studies page.

Alex Derencz

Alex Derencz is a Content Specialist with the National Multiple Sclerosis Society based in Birmingham, Alabama.

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