Research Projects
The iConquerMS community has contributed to many research studies on a wide variety of topics. Here are summaries of some of the projects conducted with and by iConquerMS. Some are under development or currently open for participation, while others are completed and have results available to view.
Please use the filters and search function to find the projects that are of most interest to you.
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Topic:HealthcareStatus:Results Available
Healthcare experiences and disparities in multiple sclerosis
iConquerMS members completed a survey about their healthcare experiences, including the diagnostic process, treatment decisions, discussions about research, and any discrimination experienced in healthcare settings. The results were analyzed by racial and ethnic group, and the findings were incorporated in an online educational program for medical professionals.What were the goals of this study?
The goal of this study was to learn about the healthcare experiences of people with MS from diverse backgrounds, and incorporate those experiences into an online educational program for medical professionals.
MS was once believed to be a "White person's disease," but we now know that it affects people of all races and ethnicities. We also know that the quality of MS healthcare a person receives can vary across populations due to factors such as discrimination and lack of availability of services.
Healthcare providers such as neurologists and MS nurses can play an important role in ensuring that all people with MS receive high-quality healthcare in their own practices and beyond. They can be more effective partners if they have a sound understanding of how MS affects people from diverse backgrounds and how bias in the healthcare system can impact health and well-being. The program created with this study was designed to deliver this information to healthcare providers in a convenient format that resonates with them.
Who led the study and what was the funding source?
The study was led by Brian Moss, CEO of Efficient CME, a company that produces medical education programs. The instructors for the program were Drs. Mitzi Williams, Annette Okai, and Stephen Krieger. EMD Serono and Janssen Pharmaceuticals, Inc. provided support in the form of educational grants.
How was the study conducted?
The study team developed a survey for iConquerMS members which incorporated input from the iConquerMS Equity, Diversity and Inclusion Committee and iConquerMS Research Committee.
The survey covered topics such as:
- Early symptoms and the diagnosis of MS
- Decisions and discussions around taking an MS medication
- Trust in and comfort with MS healthcare providers
- Experiences with discrimination when seeking MS healthcare
- Perspectives about participating in clinical research
We sent survey invitations to iConquerMS members who had previously reported being part of a racial or ethnic minority group. Invitations were also sent to White non-Hispanic iConquerMS members as a comparison group. The MS Foundation helped with recruitment by sending invitations to people who had participated in a recent Black History Month event. The survey was open during March and April 2022.
What did we learn from this study?
In all, 142 people participated in this study, including 94 (66%) people from a minority background and 48 (34%) who were White and non-Hispanic. The results highlighted a number of areas where MS healthcare experiences appear to differ based on participants’ background.
Early symptoms and diagnosis:
- Minority group members taking the survey tended to wait longer to receive an initial diagnosis of MS, despite often experiencing symptoms earlier.
- For instance, 35% of minority participants waited for 3 years or longer for their diagnosis compared with 25% of non-Hispanic White participants.
- Minority group members were also slightly more likely to be misdiagnosed with another condition before receiving their MS diagnosis.
Experiences with healthcare providers:
- Only 17% of minority group members said that their MS healthcare provider was of the same race or ethnicity, compared with 69% of non-Hispanic White participants.
- Approximately one out of four Black and mixed-race patients said they had changed healthcare providers due to being treated unfairly.
- Examples included:
- Not being listened to
- Not being taken seriously
- Being talked down to
- Having negative assumptions made about them
- 73% of minority group members said that their healthcare provider had never discussed how their racial/ethnic background might influence their MS.
Research participation:
- 77% of Black participants were interested in participating in an MS therapy clinical trial, along with 65% of non-Hispanic White participants, 47% of Hispanic participants, and 48% of participants from another minority race.
- Top reasons for being interested in clinical trials included:
- Access to new treatments
- Helping others with MS
- Helping others with similar racial or ethnic backgrounds (for minority group members)
- Top reasons stated by those who weren’t interested in participating in a clinical trial included:
- Safety risks
- Not wanting to be an experiment
- Concerns about receiving a placebo (dummy) treatment
- Nearly all patients who participated in research, regardless of background, were satisfied with their experience.
What do these study findings mean?
Despite greater awareness that MS can affect people of all backgrounds, this survey found that minority group members had a longer path to diagnosis, despite often experiencing symptoms earlier. The results also show that most people with MS belonging to minority groups see an MS healthcare provider from a different background, and were more likely to have experienced discrimination from a healthcare provider at some point during their care.
What will we do next with this information?
The educational program is online and available for healthcare providers to take. The study team is also planning to present the survey results at an upcoming MS medical and research conference to increase awareness of these important findings.
We will also review these results with the iConquerMS Equity, Diversity and Inclusion Committee, and with the iConquerMS Research, Inclusion, Diversity and Equity (RIDE) Council, to discuss how iConquerMS can contribute to further awareness and progress toward MS healthcare equity.
Learn more
Infographic: Healthcare Disparities in Multiple Sclerosis
Video: Over-Impacted, Under-Represented: Addressing Health Disparities in Multiple Sclerosis (certified medical education program)
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Topic:COVID-19, Disease Modifying Therapies, HealthcareStatus:Open for Participation, Results Available
Safety and effectiveness of COVID-19 vaccines in people with MS
iConquerMS is gathering important information about the COVID-19 vaccines and how they work in people affected by MS. The COVER-MS (COVID-19 Vaccine Response in MS) Study has been active since March 2021 and published its first set of results in November 2021. We are now collecting blood samples from COVER-MS participants to analyze the immune response to the vaccine.What are the goals of this study?
- To learn about the effects of the COVID-19 vaccines in people with MS, including how they work and what the side effects are
- To produce information that can help guide people with MS and their healthcare providers in making decisions related to COVID-19 vaccination
Who is leading the study and what was the funding source?
The study is being conducted by the iConquerMS research team in collaboration with Dr. Farren Briggs (Case Western Reserve University) and Dr. Farrah Mateen (Massachusetts General Hospital). A steering committee that includes people with MS is guiding and overseeing the study. The project is being funded by the National MS Society and Quest Diagnostics.
How is the study being conducted?
All iConquerMS members are eligible and welcome to participate. Currently there are over 1,500 participants. We ask participants to answer a few surveys on the iConquerMS portal at different timepoints asking about:
- Details of the vaccine that was received (e.g., date received and vaccine manufacturer)
- Short-term reactions to the vaccine (e.g., arm soreness)
- MS symptoms (type of symptom and severity) before and after receiving the vaccine
- COVID-19 infection (for anyone who becomes infected with COVID-19 after vaccination)
- Demographics (e.g., date of birth, race, ethnicity)
- MS characteristics (e.g., type of MS, MS therapies)
We are also inviting some COVER-MS participants to provide blood samples for a substudy. This substudy will analyze the immune responses (antibodies and T-cell activity) to the vaccines to learn how these responses are affected by MS drugs and other factors.
What are we learning from this study?
Our initial study findings have to do with reactions (side effects) to the vaccines. We have learned that:
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The frequency of vaccination reactions reported in COVER-MS was very similar to that reported in the COVID-19 vaccine clinical trials
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Pain was the most commonly reported reaction, followed by fatigue and headache
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Reactions were more common in younger people, women, those with a prior COVID-19 infection, and those who had a reaction after the first shot
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Reactions were not affected by being on an MS drug, or type of MS, or how long someone has had MS
What do these study findings mean?
People with MS should not be concerned about having more serious reactions to the COVID-19 vaccinations compared to the general population.
What will we do next with this information?
The results of the study have been published in a variety of formats (see below) and have been shared with the National MS Society to inform their COVID-19 vaccination guidance for people with MS.
Learn more
Video: "Chat with Chat" interview with Dr. Farren Briggs
Infographic: COVER-MS Findings - COVID-19 Vaccine Reactions
Journal article (open-access): COVID-19 Vaccination Reactogenicity in Persons With Multiple Sclerosis
Data: COVER-MS Data Dashboard
Share this project summary with others:
https://www.iconquerms.org/safety-and-effectiveness-covid-19-vaccines-people-ms
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Topic:Wellness & Diet, Quality of LifeStatus:Results Under Analysis, Results Available
Wellness and diet, MS characteristics, and health outcomes
Data from the REAL MS Wellness & Diet survey are being analyzed by researchers at the University of Melbourne (Australia) to explore associations between lifestyle and health outcomes. Their initial findings focused on the impacts of wellness and dietary practices based on MS subtypes.What are the goals of this study?
The overall goal of this study is to understand how health and well-being for people with MS are affected by various diet and wellness practices. The initial analysis focused on learning if there is a difference in benefits between people with progressive MS and people with relapsing-remitting MS.
Who led the study and what was the funding source?
The study is being led by Dr. Nupur Nag from the Neuroepidemiology Unit at the University of Melbourne. This research team has an ongoing project called Health Outcomes and Lifestyle In a Sample of people with Multiple Sclerosis (HOLISM) which studies connections between lifestyle practices and well-being in people with MS. Dr. Nag requested data from the REAL MS study to see if findings from the iConquerMS cohort would be similar to or different from the HOLISM findings.
The funding for this analysis was provided by the Neuroepidemiology Unit.
How was the study conducted?
The iConquerMS online community was invited to fill out twice-annual REAL MS surveys that includes questions on:
- Demographics (such as age, employment, and education)
- MS status
- Diet, vitamin and supplement usage
- Wellness practices
- Physical activity
- Quality of life factors including pain, fatigue, mobility, motor coordination, depression, cognition, social participation, and sleep.
Dr. Nag and her colleagues analyzed REAL MS data from 1,108 members to look for associations between lifestyle behaviors, type of MS, and health outcomes and quality of life (QoL).
What did we learn from this study?
Key study findings include:
- Diet, wellness, and physical activity were associated with quality of life (QoL); no associations were seen for vitamin D or omega-3 supplement use
- Certain diet types were negatively associated with QoL in relapsing-remitting MS (RRMS), and positively associated in progressive MS
- Participation in wellness activities had mixed associations with QoL in RRMS but was not associated in progressive MS
- Physical activity was positively associated with QoL in RRMS and progressive MS
- Differences in associations between lifestyle practices and individual components of QoL (physical, mental and social) were seen for RRMS and progressive MS
What do these study findings mean?
Understanding how various health behaviors impact MS symptoms and quality of life in people with relapsing-remitting compared with progressive MS can help guide personalized management strategies that are specific to disease course. These results show lifestyle behaviors are associated with QoL, and these associations appear to differ based on type of MS (RRMS or progressive MS). Further research studies, using techniques that can better measure the impact of behaviors on health outcomes, are required to better inform MS management.
What will we do next with this information?
Dr. Nag and her colleagues will continue to analyze the REAL MS data further and expect to publish additional findings on the connection between wellness behaviors and health.
Learn more
Journal article (open-access): Associations between Lifestyle Behaviors and Quality of Life Differ Based on Multiple Sclerosis Phenotype
Video: "Chat with Chat" interview with Dr. Nupur Nag
Share this project summary with others:
https://www.iconquerms.org/wellness-and-diet-ms-characteristics-and-health-outcomes
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Topic:HealthcareStatus:Results Available
MRIs in MS: Access, knowledge, and interest among people with MS
iConquerMS partnered with the Belgium-based imaging company Icometrix to conduct a survey about the MRI-related knowledge, attitudes, information needs, and experiences of people with MS.What are the goals of this study?
MRI is an important tool for monitoring and managing MS and can help show how the disease is progressing or how well an MS treatment is working. People with MS are encouraged to take an active role in their disease management, but may not know how to access their MRI images or understand what they mean.
Who led the study and what was the funding source?
The study was led by Lars Costers at Icometrix and Hollie Schmidt at iConquerMS with internal funding.
How was the study conducted?
We developed an online survey which iConquerMS members were invited to take. The survey covered topics such as frequency of MRI scans, interest in the information provided by MRIs, ability to access MRI images and view them, and attitudes toward sharing MRIs with researchers. In all, 876 people with MS took the survey.
What did we learn from this study?
Key study findings include:
- Only 55% of the people taking the survey have an MRI scan at least once a year
- 73% had requested or received an electronic copy of their MRI; 27% had never received one
- Of those who had looked at their images on their own, 13% understood them completely, 54% understood them somewhat, and 33% didn't understand them very much or at all
- Barriers to viewing images included not knowing how to view the images, not having the necessary software, and not knowing how to interpret them
- Almost all people taking the survey (95% or more)
- were interested in knowing about changes from one MRI to the next
- wanted to know if their MRI was performed according to current guidelines
- were willing to share their MRIs with researchers
What do these study findings mean?
These findings indicate that although some people with MS are able to view and understand their MRI images, most would need education and support to do so. There is strong interest in knowing what the MRIs show in terms of changes over time, and in whether guidelines are followed in performing the MRIs.
What will we do next with this information?
Icometrix is making use of these results as they develop tools for people with MS, including applications for viewing MRIs. You can learn more at their website: icometrix.com
Learn more
Video: "Chat with Chat" interview with Annabel Descamps
Presentation: Results shared at the 2021 ACTRIMS conference
Share this project summary with others:
https://www.iconquerms.org/mris-ms-access-knowledge-and-interest-among-people-ms
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Topic:Quality of LifeStatus:Results Under Analysis
Tailoring employment supports for people living with MS
In this study, iConquerMS members will be surveyed about their employment experiences, including their use of resources aimed at enabling them to remain employed. The results will be used to predict whether a person will need specific sources of support to stay in the workforce, and to develop a system for providing tailored, just-in-time information and resources to people based on their individual needs and characteristics.What are the goals of this study?
The rate of employment among working-aged adults with MS is consistently well below that of the general population. For a variety of reasons, adults with MS frequently leave employment before it is necessary, often without knowing about resources that may enable them to remain employed. The goal of the study is to learn more about the factors that influence whether a person with MS remains employed, so that personalized assistance can be provided that helps people with MS stay in the workforce. Who is leading the study and what is the funding source?
The study's principal investigator is Dr. Malachy Bishop of the University of Wisconsin-Madison. The study funder is the University of Wisconsin-Madison.
How will the study be conducted?
All iConquerMS members who are currently employed or who have been employed within the past 5 years are eligible to participate in this study. We are asking interested participants to answer a survey on the iConquerMS portal. The surveys ask about topics such as:
- Current employment situation
- Impact of specific MS symptoms on ability to work
- Workplace accessibility
- Disclosure of MS status in the workplace
- Perceived employer and co-worker stigma and discrimination
- Communication about and use of on-the-job accommodations
- Understanding of various employment-related resources, services and benefits
What is the study status?
The survey data is currently being analyzed by the research team. We will share the results as soon as they are available.
Share this project summary with others:
https://www.iconquerms.org/tailoring-employment-supports-people-living-ms
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Topic:Healthcare, Wellness & DietStatus:Results Under Analysis
Use of complementary and alternative medicine by people with MS
iConquerMS members were surveyed about their use of and experience with complementary and alternative medicine (CAM), both before and during the COVID-19 pandemic.What are the goals of the study?
Many people with MS use complementary and alternative medicine (CAM) for their MS and/or for other health reasons. CAM includes practices or products that are not typically included in standard or conventional healthcare, such as acupuncture, meditation, or herbal therapies.
However, researchers and policymakers don't know how many people with MS are using CAM and which types of CAM they're using. Other unanswered questions include whether people with MS are integrating their CAM practices and services with their usual healthcare, how much they're paying for CAM including any insurance coverage, their reasons for using CAM, and perceived benefit of CAM.
The goal of this study was to learn more about these topics so that the National MS Society could better advocate for access and insurance coverage of CAM on behalf of people with MS.
Who led the study and what was the funding source?
The study was conducted by Gryphon Scientific and colleagues at the Accelerated Cure Project and the Veterans Health Administration. Funding was provided by the National MS Society.
How was the study conducted?
In September 2021, iConquerMS members were invited to fill out a survey asking about their use of CAM services, products and practices. Because the COVID-19 pandemic may have affected people's ability to access certain forms of CAM, we asked people to provide information about calendar years 2019 and 2020.
Topics covered in the survey included:
- Types of CAM services, products and practices used
- Out of pocket costs and insurance coverage for CAM
- Whether the person discussed their use of CAM with their conventional healthcare providers or not
- Whether the person felt that the type of CAM they used was helpful
The researchers also conducted interviews with a subset of the survey participants to learn more about their experiences with CAM. Another part of the study included analyses of large national health databases with information about CAM.
What is the study status?
The results have been analyzed and a report is in development.
Learn more:
Video: "Chat with Chat" interview with Dr. Sarah Minden
Share this project summary with others:
https://www.iconquerms.org/use-complementary-and-alternative-medicine-people-ms
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Topic:HealthcareStatus:Results Under Analysis
Use of and attitudes toward telemedicine in MS
iConquerMS members were surveyed about their use of and experience with telemedicine (healthcare delivered over the phone or Internet), both before and during the COVID-19 pandemic.What are the goals of this study?
This study was conducted to learn about how people with MS are using telemedicine for different types of services, and what their experience has been like. Another goal was to learn about how people feel about telemedicine in terms of its benefits and its drawbacks. This study was part of a larger project to inform and support the healthcare advocacy program of the National Multiple Sclerosis Society.
Who led the study and what was the funding source?
The study's principal investigator is Mitchell Wallin, MD, at the VA Medical Center Neurology Service in Washington, DC. The study funder is the National Multiple Sclerosis Society.
How was the study conducted?
In January 2020, iConquerMS members were invited to fill out a survey asking about the types of healthcare they were receiving, either in-person or by telemedicine. For those who had had a telemedicine visit, the survey asked for the details of the visit, any issues experienced, and the reason for using telemedicine. Participants were also asked for their views of the advantages and disadvantages of telemedicine, and whether they preferred in-person visits or telemedicine for certain types of healthcare services.
The survey was repeated in the fall of 2020 in response to the increased use of telemedicine as a result of the COVID-19 pandemic. A subset of iConquerMS members were also interviewed to learn about their experiences in more detail.
What is the study status?
The results have been analyzed and are being prepared for publication.
Learn more:
Video: "Chat with Chat" interview with Mitchell Wallin
Share this project summary with others:
https://www.iconquerms.org/project-MS-telemedicine-experiences
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Topic:COVID-19, Healthcare, Quality of LifeStatus:Results Available
Impact of COVID-19 and the pandemic on people with MS
iConquerMS participants answered two online surveys about their experiences with COVID-19, including effects on their access to healthcare, how they were seeking information about the virus, and impact on physical and psychological health.What were the goals of this study?
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To understand the health impact of COVID-19 on people with MS, including the effect of disruptions in treatment and health care access.
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To understand the impact of the COVID-19 pandemic on depression, anxiety, and isolation for people with MS.
- To understand what people with MS know about COVID-19, their access to testing and treatment, and steps they were taking to avoid infection.
Who led the study and what was the funding source?
The study was led by Dr. Farrah Mateen of Massachusetts General Hospital and Harvard Medical School. Funding for the study was provided through an unrestricted grant from Biogen.
How was the study conducted?
iConquerMS members were invited to fill out two online surveys. The first was available beginning April 2020 and the second was available beginning December 2020. The surveys included questions on COVID-19 testing and infection, hospitalizations, symptoms, and concerns. Participants were also asked for information about MS symptoms, quality of life, attitudes toward vaccines, and characteristics such as age, type of MS, sex, and race/ethnicity. Just over 1,000 people completed each survey.
What did we learn from this study?
Key study findings include:
- At the beginning of the pandemic, a majority of people with MS reported interruptions to their regular MS care due to COVID-19 as well as limited access to COVID-19 testing.
- 10% reported changes to their normal MS treatment protocols
- Early in the pandemic, fewer than 1% reported a positive COVID-19 test, but more than half reported having symptoms
- Later in the pandemic, people with MS were about as likely as the general population to be infected with COVID-19.
- More than 75% of participants were willing to receive vaccines once they became available. Older individuals were more likely to want to get the vaccine while those with more disabilities were less likely. The greatest source of concern about the vaccines was safety.
- 27% of participants reported symptoms of depression and 15% reported experiencing anxiety. Those who were younger in age, who were female, or who had tested positive for COVID-19 were more likely to experience these effects.
What do these study findings mean?
These surveys tell us that COVID-19 has taken a significant toll on people with MS in terms of mental health and ability to maintain social connections. We also learned that the pandemic forced many people with MS to postpone medical care and disrupted MS treatment plans.
We also learned about the concerns and priorities of people with MS during the pandemic, including worry about being infected with COVID, concerns about activities associated with risk of exposure, and attitudes toward vaccination.
What will we do next with this information?
The results of the study have been published in a variety of formats (see below) to help inform education and treatment approaches, policies around access and health care delivery, and development of new research questions. iConquerMS has also used the results of these surveys when designing the COVER-MS study, our study of COVID-19 vaccinations in people with MS.
Learn more
Video: "Chat with Chat" interview with Dr. Farrah Mateen
Infographic: COVID-19 in MS PDF (118 KB)
Journal article (open-access): Impact of the COVID-19 pandemic on the health care of >1,000 people living with multiple sclerosis: A cross-sectional study
Journal article (open-access): COVID-19 vaccine hesitancy in multiple sclerosis: A cross-sectional survey
Journal article (open-access): Sociodemographic and clinical factors associated with depression, anxiety, and general mental health in people with multiple sclerosis during the COVID-19 pandemic
Abstract: Risk factors for COVID-19 infection in patients with multiple sclerosis: a nested case–control study
Share this project summary with others:
https://www.iconquerms.org/project-impact-COVID-MS
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