Multiple Sclerosis Research Studies
Multiple Sclerosis Research Studies
Having multiple sclerosis can be a daunting challenge. But participating in multiple sclerosis research studies is one action that can have a number of positive benefits. Arming yourself with information and building a support network are the first steps to building your strategy for success. And once you've done that, consider the benefits of participating in multiple sclerosis research studies. Not only are you contributing to the greater good by helping to advance scientific understanding and treatment options, but you are taking steps to improve your health. And being proactive helps combat feelings of helplessness. It also connects you to another level of support and gives you access to doctors and researchers that would otherwise not be available to you.
MS Society's Listing of MS Surveys and Studies
The National MS Society is committed to delivering accurate and reliable information to everyone affected by MS, and subsequently reviews many requests for participation in MS surveys. Following is a list of surveys (mostly online) and other research studies seeking to recruit people with multiple sclerosis that has been reviewed by the Society and offered as information only, not an endorsement or recommendation. The surveys/studies are being conducted either by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies conducting market research efforts to develop or improve products for people with MS. Further details about each survey/study, as well as contact information, are included.
Mother to Baby Pregnancy Study
MotherToBaby is currently enrolling participants into an observational study examining the use of Kesimpta® (ofatumumab) when taken shortly before or during pregnancy. Our studies are strictly observational, which means we will never ask you to take any new medicines, experimental drugs or to change any part of your healthcare routine. If you enroll, you’ll simply be followed by our team through the remainder of your pregnancy, and your baby will be followed for a period of time after birth.
Our goal is to provide parents and their health providers with the evidence-based information that they need to make more informed healthcare decisions during pregnancy. To do that, we need your help. If you have multiple sclerosis and have taken Kesimpta® (ofatumumab) at any point in your current pregnancy, or 5 1/2 months prior to pregnancy, you may qualify for this important study.
What’s Involved?
Our study includes:
- 1-3 phone interviews during your pregnancy and at least 1 interview after you have your baby.
- Your permission to obtain a copy of your medical records from your healthcare provider for your pregnancy and for your child through 1 year of age.
- An opportunity to receive a specialized, non-invasive exam of your baby with a study doctor
- An online neurodevelopmental assessment that can also provide insight into the child’s development at approximately 12 months of age
All the information we request will be kept confidential. Your privacy is important to us. We comply with strict regulations and laws set forth by state and federal agencies as well as the Institutional Review Board (IRB) at the University of California, San Diego, who oversees and monitors our research. Since we ask for your permission to obtain medical records, we will also give you detailed information on how this data will be used and how we will protect your privacy.
CAFE-MS Online Study on Reducing Fatigue
Investigators are recruiting 2,000 people with multiple sclerosis for the Confirmatory Trial for Alleviating Fatigue in Multiple Sclerosis (CAFE-MS). The goal of the study is to determine whether an online program can reduce fatigue by improving self-management. Fatigue is one of the most common and challenging symptoms reported by people with MS. Medication-based treatments have had mixed results in studies. But a “digital therapeutic” program, which guides people in self-management of fatigue has shown promising results.
Eligibility and Details:
- Participants should be US residents, older than 22, diagnosed with MS, and signed up with the iConquerMS patient registry.
- They should have moderate or severe fatigue that impacts their daily life, which will be measured using the Fatigue Severity Scale questionnaire.
- Participants should be fluent in English and have access to the internet and e-mail.
- Participants should not have had a relapse, started a new disease-modifying therapy, or had steroid treatment in the four weeks before being screened for study eligibility.
- Participants must enroll in iConquerMS to be considered for this study. This is a 2-step process that takes less than 5 minutes. Please click here to join.
- Participants will receive up to $120 for completing these surveys.
What is Involved? 2,000 people with MS will be randomly assigned to complete one of two six-month online fatigue management programs, or continue with their usual treatment. Both online programs contain potentially useful information to help people with MS understand and manage their fatigue. Participants assigned to the other digital program or control arm for the first 6 months will have an opportunity to choose to participate in the intervention for the final 6 months of the trial. Participants will fill out questionnaires monthly for six months, and again one year after entering the study.
Contact: For more information, please visit cafems.iconquerms.org. If you are interested in participating click the “Join the Trial” button, or fill out this webform.
PROMS: Patient Reported Outcome Measures Survey
Patient-reported outcome measures (PROMs) are the tools that can be used to capture how patients feel and how well they’re doing in a more structured and standardized manner. These could be something like questionnaires with a standard list of questions or rating scales. The answers you give are then turned into numbers or scores that can be compared and analyzed. These scores help your healthcare team, yourself, or researchers track changes in your health over time, and can also be used to measure the effect of certain treatments or therapies.
Why has the PROMS initiative developed a survey about digital tools for people with MS?
The PROMS Initiative global survey aims to learn what really matters to people with MS all around the world. We want to listen to as many different voices as possible, so that the research and healthcare being developed is based on what people with MS actually need.
This survey aims to understand attitudes towards using digital tools such as apps and websites on smartphones, tablets and computers and wearable devices (such as smart watches or rings) to capture information about your experiential knowledge. We want to explore what digital tools are available to people with MS worldwide, potential advantages to using them, concerns you may have about digital tools (including data security), and any barriers to using these tools over a long time period.
The National MS Society Brain Bank
A Key Resourse for Understanding, Treating and Finding A Cure for Mutliple Sclerosis.
The National Multiple Sclerosis Brain Bank is an invaluable resource in the fight to cure MS by providing researchers access to brain, spinal cord, and related tissues. The brain bank’s mission is to collect the tissue and make it available for study of the disease’s pathology — its nature, and cause and effects on the brain.The brain bank also could revolutionize MS studies, such as identifying biomarkers, or predictors that could be detected with MRI or a blood test.
How It Works:
The brain bank is unique in its lifecycle approach. People volunteer to donate their organs, but while they’re living, data is collected to make the best use of that tissue when the time comes. In addition to identifying the type of MS the donner has — relapsing-remitting or progressive — the bank collects details about how the disease is impacting them, including their symptoms, treatments and disease course to help scientists make sense of what they’re looking at in the tissue.
Established in 2020, the Brain Bank is a collaboration between investigators at Columbia University, the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS), and the Yale School of Medicine.
Why It's Important:
The brain bank provides a piece of the MS puzzle that has thus far been missing. It gives researchers the opportunity to learn about what drives the slow loss of nerve cells and how we can repair them:
- the cellular and molecular mechanisms that drive the loss of nerve cells in the brain and spinal cord
- the capacity of the central nervous system for repair and how that might be enhanced therapeutically
How to Donate:
To become a tissue donor, visit the National Multiple Sclerosis Brain Bank. The brain bank welcomes specimens from people with and without MS. If you have MS, you’ll be invited to enroll in a prospective study to learn about the course of your disease and symptoms related to MS as well as your course of treatment. You’ll also be invited to share MRI data and visit the Columbia MS Center occasionally for an in-person visit if possible.
The UCSF Multiple Sclerosis Genetics Study
If you live with multiple sclerosis, you and your family members can help cure the disease by donating your DNA. A gene is the basic unit of inheritance, and DNA is the molecule that carries genetic information. The UCSF Multiple Sclerosis Genetics Group are asking participants to donate DNA to the Multiple Sclerosis Biorepository. Researchers need DNA samples to understand the genes that increase the risk of MS.These studies could change the diagnosis and treatment of the disease. Over time, they could also lead to prevention measures that end MS forever.
The studies are nationwide, so you may participate even if you do not live near San Francisco, Calif., or plan to travel there. If you or someone in your family is interested in participating in this study go to UCSF MS Genetic Susceptibility: Enrollment Eligibility Survey To receive more information, go to UCSF MS Genetics Project.