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 below.
If you would like us to post a study on these pages, please email email@example.com to find out what information you need to submit for review.
Multiple Sclerosis and Neurologic Music Therapy
Lesley University is looking for individuals who would like to participate in a research study exploring the knowledge of, exposure to, and experiences with Neurologic Music Therapy of people with MS in the rehabilitation setting. Individuals with Relapsing Remitting Multiple Sclerosis are invited to participate regardless of health status.This survey should take about 10-15 minutes.
• Must be at least 18 years old
• Must be diagnosed with Relapsing Remitting Multiple Sclerosis
• Must live in the U.S.
•Must be able to read, speak and write English
If you have questions about the study, please contact Julettia Williams (Investigator) firstname.lastname@example.org
or E. Kellog (Principal Investigator) at (617.349.8568 / email@example.com
for the consent form and the survey.
MS and Quality of Life: The Role of Recreational and Physical Activity
Researchers at The University of North Carolina at Greensboro are conducting research exploring quality of life in individuals with MS. This research examines some of the factors that may impact quality of life in people with MS such as recreational activities and physical activity participation. Participants will be asked to fill out an anonymous online survey that will take less than 20 minutes. The survey will ask about thoughts, behaviors, and motives for activities you may participate in, including physical activity, as well as how you rate your quality of life and satisfaction with life.
Participants for this research need to be between the ages of 18 and 65 and must have been diagnosed with MS at least one year ago. There are no other requirements. You DO NOT have to participate in any recreational or physical activity to take the survey.
Survey link can be found at: https://uncg.qualtrics.com/SE/?SID=SV_3JH5TjvAH6TCLPf
If you have any questions regarding this research you may contact Kimberly Fasczewski (principle investigator) via email at: firstname.lastname@example.org
or via phone at (423) 400-3009.
Examining Mindfulness and the Workplace Accommodations Request Process
Researchers at the Florida State University are looking for individuals with disabilities who would like to participate in an online research study aimed at exploring mindfulness and the decision to request workplace accommodations. The survey will include questions about participants and the organizations that they are working with, as well as questions pertaining to their perceptions, abilities, and emotions regarding the job accommodation request process. This survey will take approximately 20 minutes to complete.
If you are an individual with a disability (18 years or older), and have had a need for a workplace accommodation within the past three months, please click the link below to get more information and to get started.
If you have any questions about the research study itself or need alternative formats of the survey, you can contact Stacy Rademacher by email at email@example.com.
Walking and Talking - Multitasking with MS (New York City)
Doing two things at the same time can be challenging, especially for individuals with MS. How do our cognitive resources help us navigate complex or noisy environments?
To investigate this question, researchers at the Cognitive Neurophysiology Lab at the Albert Einstein College of Medicine in the Bronx are conducting a study measuring brain activity while participants walk on a treadmill.
• Must be 25-45 years old
• Must be diagnosed with Multiple Sclerosis
The study involves two parts: a neuropsychological evaluation (lasting about 1.5 hours) and an EEG study where you will be asked to walk on a treadmill and perform a simple cognitive task. EEG is a simple, non-invasive and painless method to look at brain activity (lasting about 3-4 hours). The lab is easily accessible by car or public transportation.
Participant will be compensated. If you are interested, please contact Dr. Pierfilippo De Sanctis by Telephone: (718) 862-1828 or (718) 862-1848; Email: firstname.lastname@example.org
Dietary and lifestyle factors and MS progression
Researchers at Bastyr University are collecting as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression. They are seeking the positive deviants. In this study, they are going to monitor participants’ health and disease status, and describe the dietary and lifestyle factors associated with the positive deviants. Among individuals with MS who are doing really well, what are they doing?
People with MS are invited to participate regardless of health status. The more people who participate, the more can be learned. To participate in this study, please read the consent form posted at www.CAMCareMS.bastyr.edu. Then fill out an online questionnaire every 6 months for the next five years.
Part 1: How are you doing? What are your habits? (15-30 min)
Part 2: What do you eat? (20 min)
Please direct any questions to Dr. Mischley at 425-602-3306 or email@example.com.
Examining self-compassion and health-related quality of life for individuals with MS
Studies have shown that individuals with MS report lower rates of physical activity than the general population. Research is needed to examine how to increase individual’s physical activity to improve quality of life in this population. Researchers at Oregon State University are conducting a study to investigate the relationship of self-compassion on resilience, physical activity, and quality of life for individuals with MS. They are inviting people with MS to participate in an online survey to gather information.
The survey takes approximately 20 to 30 minutes to complete.
If you are between the ages of 18 and 65, can communicate in English, and have a medical diagnosis of MS, you are eligible to participate in this study.
Participation in the survey is voluntary and all survey data will be deidentified.
Click here for the survey
If you are interested or have any questions, please contact the research team at: firstname.lastname@example.org
Everyday behavior, thinking, and brain health in MS - Ohio
The Clinical Neuroscience Lab at The Ohio State University is conducting a study to examine the relationship between behavior, thinking abilities and brain health in relapsing-remitting multiple sclerosis. The study requires two visits to the OSU campus, tailored to your schedule. Participants are compensated for their time and parking. You may be eligible for this study if:
• Between the ages of 30-59
• Clinically definite diagnosis of relapsing-remitting multiple sclerosis (RRMS)
• Have no other neurological or psychiatric diagnoses besides RRMS
If you are interested in participating, please contact the study coordinator at email@example.com or 614-292-9568 for more information.
Mind-body practices to support wellness in people with MS - San Diego, CA
Researchers at the University of California, San Diego are conducting research on complementary mind-body practices to support wellness in people with relapsing-remitting MS, including guided journaling and guided imagery. The study involves a phone screening session, a 2-hr initial session at UCSD, and then ten further 1-hour sessions (1 per week) either at UCSD School of Medicine (Hillcrest location), or at home on your own, depending on which branch of the study you are assigned to. Scheduling is flexible. If you would like to schedule a phone screening, please contact Dr. Case at firstname.lastname@example.org.
Multiple Sclerosis: Strategies for Graphic Design
The “Inclusion Framework” for Print Communications targeted at the Multiple Sclerosis Community.
The aim of this research is to prototype an “inclusion framework” that will advance knowledge for the design community about symptoms of Multiple Sclerosis and provide them options when working on MS-related communication pieces. “Inclusion” references attitudes and behaviors that accommodate people with disabilities without restriction while “framework” is a proposed thinking model that will focus on printed communications targeted at this community.
This proposed research will result in an exploration into graphic design in printed communications and in what ways design solutions can be tailored for people with Multiple Sclerosis. The survey will take no longer than an hour to complete and is conducted online anonymously. Participants will be asked several questions in relation to both graphic design, design thinking and their Multiple Sclerosis conditions. There are no exclusionary criteria based on age, gender, nationality, race, or ethnicity. The only criteria to participate is a confirmed diagnosis of Multiple Sclerosis. All results of the survey are anonymous to ensure complete confidentiality.
Click Here for the Survey
Researchers from the Masters of Science in Occupational Therapy program at California State University, Dominguez Hills seek to examine factors that may determine quality of life (QoL) of a person living with MS. Information from this study will increase the knowledge base of the psychosocial issues affecting those with MS and may help improve occupational therapy interventions aimed to benefit the population. Subjects for this study will be 18 +, have been diagnosed with MS, and can read English proficiently. The online survey takes approximately 20 minutes. Participation is voluntary and information is anonymous.
If you are interested in participating in the study, please click here for the consent form and the survey.
If you have any questions please contact OTMSStudy@gmail.com or (818) 462-3640
Participating in clinical research
The University of Rochester Medical Center is currently recruiting patients and caretakers of patients who have a rare disease diagnosis to participate in a research study that involves a one-time survey. This will help us understand your thoughts about and experiences with participating in clinical research.
The purpose of this study is to learn more about how people impacted by rare diseases make decisions about participating in clinical research. This study also will ask questions about your experiences and comfort with technology (computers, smartphones, etc.). This study will help researchers in planning future clinical research studies for people with rare diseases, including clinical trials.
To learn more about this study or complete the survey if you choose to participate, click on the following link: https://redcap.urmc.rochester.edu/redcap/surveys/ and enter the code: DDPR3RYJ4.
If you have questions about the study, please contact Travis Amengual (Investigator) or Dr. Erika Augustine (Principal Investigator) at (585)-273-3810 or by email at email@example.com.
Learn to manage sadness and depression with an online program
Adults who have a chronic medical condition and struggle with depression may be eligible to participate in a study to determine the effect of an 8-week program to improve depressive symptoms in people with chronic illnesses. The online program is called “Think Clearly About Depression” and is based on principles of Cognitive Therapy.
This program has videos, activities, and lessons designed to help you understand the role that thinking plays in depression. It helps you to learn new skills such as recognizing and replacing negative thoughts and applying constructive thinking. Participants can be compensated for completing online surveys.
This study has been reviewed and approved for human subjects participation from the Washington State University Institutional Review Board. Please contact 509-324-7443 or firstname.lastname@example.org for more information.
Studying fatigue in MS and other diseases
DePaul University researchers invite persons with ME, CFS, MS, Lupus, and Cancer to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.
Adults at least 18 years of age
• Must be able to read or speak English
• Have a diagnosis of Multiple Sclerosis, Lupus Erythematosus, or Cancer.
Click here to access the survey
Social economic costs, quality of life, and experience in people with MS and their caregivers
This survey is part of an international project gathering evidence about the merits of moving away from the use of relapse as a measure of disease progression to the use of more accurate diagnostic follow up to monitor disease progression and the earlier use of disease modifying drugs to achieve better clinical results for patients. It will also assess the socio-economic impact of such a change. The project includes patients and clinicians from a range of international patient and professional associations based in Europe and North America.
Investigators are asking people with MS to complete the following questionnaire about their experiences which will take approximately 30 minutes to complete.
Click here for the survey
Another version of the questionnaire has been developed to capture the responses of the caregivers who are providing support and care for people with MS.
Click here for the caregivers' survey
Please note that the researchers will not know who has responded, and all the results will be collected and reported anonymously. Responses will not be used for any purpose other than this research and once the responses have been fully analysed they will be deleted.
The research team will create a short report in late 2015 with the results of the research. A more detailed report on the study findings will be available from the researchers upon request, once it has been published.
For more information about the project you can contact the research team (Michela Tinelli, email email@example.com or telephone +44 20 7955 6628; Jean Mossman, email firstname.lastname@example.org).
Looking for participants for an online survey for mothers with physical or mobility disabilities
UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy. To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities.
If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff.
If you are eligible, participation involves about 20 minutes of your time, answering questions about your health care experiences during your most recent pregnancy. The survey is anonymous; you will not provide any contact information.
Seeking controls without MS to help develop cognitive tests for MS - West Orange, NJ
Researchers at Kessler Foundation are conducting a large, multi-site study to develop test norms for a commonly used measure to assess thinking speed, the Symbol Digit Modalities Test (SDMT). To be eligible, you must be between the ages of 18 to 74 and medically healthy. You also must not have any past or present diagnosis of a learning disability, alcohol or drug problems, or diagnosis of a signficant mental health disorder (e.g., bipolar disorder, psychosis). Please contact Monika Michalec at 973-324-8428, or email@example.com to find out more and to see if you are eligible. The study visit should take about one hour and you will be compensated for your time.
Job accommodation request survey
Individuals who are aged 55 or older and need job accommodations are being sought for a study by researchers at the Florida State University to share perceptions of factors related to accommodation requests by answering a few questions about yourself, your organization (if applicable), and your abilities and emotions in the process. This survey will take about 20-30 minutes. The results will help service providers and employers to learn more about how to improve the job accommodation process for older workers, considering the fast trend in aging workforce.
Click here to complete the survey.
MS and experiences of Trauma and Growth
The Marginalization, Mental Health, and Empowerment Team at Teachers College, Columbia University is looking for individuals who would like to participate in a research study exploring the life experiences of individuals with MS. The survey will include questions on social support, posttraumatic stress, life satisfaction, depression, and background/demographic information. This survey should take about 15-20 minutes.
• Must be at least 18 years old
• Must be diagnosed with Multiple Sclerosis
• Must live in the U.S.
Click here to begin the survey.
This study has been approved by the Teachers College, Columbia University Institutional Review Board: Protocol #15-085. If you have any complaints, questions, concerns, or would like to know the results, please contact firstname.lastname@example.org
Investigators Seeking Tissue Samples Previously Obtained from People with MS and Similar Diseases
In order to discover the triggers of MS, National MS Society-funded investigators at the University of Utah are seeking to collect existing brain biopsy tissue from individuals nationwide who underwent a brain biopsy to diagnose an episode of “acute demyelinating disease,” including multiple sclerosis, acute disseminated encephalomyelitis, optic neuritis, or clinically isolated syndrome. The researchers will arrange for the transfer of the tissue. No visits to the University of Utah are needed. Read more.
Simulated Environments and Everyday Functioning in People with MS and other Neurological Conditions
Washington State University is looking for individuals with MS to participate in an ongoing study in Spokane, WA. The purpose of the study is to evaluate how various neurological conditions impact everyday functioning. The project also aims to understand that deficits that result from MS and to develop an ecologically valid assessment using a simulated environment that can help understand everyday functioning in individuals with cognitive impairment.
The study takes approximately 3 hours to complete and is conducted at St. Luke’s Rehabilitation Institute in Spokane, WA. Participants will be asked to complete several tasks, which are similar to solving problems or games, and to complete several tasks of daily living in St. Luke’s Community (a simulated environment).
Participants will receive a free neurocognitive report detailing performances on tasks of memory and thinking abilities, and will be compensated.
• Diagnosed with a neurological condition, such as multiple sclerosis, or have a neurologic injury, such as a traumatic brain injury or stroke.
• Be able to speak English fluently
• Have no current psychoactive substance abuse
• Have no diagnosis of dementia
Contact: If you are interested in participating in the study or have any questions about the study, please contact WSU’s Memory and Aging Lab at (509) 335-4033 or email Kayela Robertson at email@example.com.
Understanding PML (Bethesda, MD)
Doctors at the National Institutes of Health (NIH) are conducting a research study to better understand the disease course and pathogenesis of progressive multifocal leukoencephalopathy (PML). PML is a devastating, demyelinating disease affecting the brain of patients with a compromised immune system. This can be due to medications that change the immune system (like natalizumab, Tysabri) or due to other conditions like HIV infection. No treatment is currently available for PML. They are recruiting patients with PML to help learn more about the disease course and pathophysiology to help diagnose PML earlier and to identify potential therapeutic targets. Participants will be seen several times at the NIH in Bethesda, Maryland. Travel expenses will be paid and participants will be compensated for taking part in the research study. Evaluations will involve clinical exam, magnet resonance imaging with contrast, blood tests, and analysis of cerebrospinal fluid.
For more information, email: firstname.lastname@example.org.
Investigators seeking people with MS who are gainfully employed or are considering leaving the workplace or cutting back hours
Researchers at the Kessler Foundation are interested in learning more about the factors associated with employment decisions in MS. They are recruiting individuals with MS who are gainfully employed. In particular, they are looking for people who are considering leaving the workforce or feeling as if they need to cut back on hours. All participants will complete an online survey asking about their work status and various factors thought to be related to managing one’s MS and ability to work. If interested, please contact Ally at email@example.com or 973-324-8391 or Dustin at firstname.lastname@example.org or 973-324-8444.
Researchers in California recruiting patients and first-degree relatives of people with MS for stem cell research study
Researchers from the University of California, San Diego and the Salk Institute, La Jolla, CA are recruiting people with MS who have a parent with MS and a non-affected sibling to give a small skin punch biopsy. The purpose of this study is to convert skin cells (fibroblasts) from MS patients and relatives into a stem cell-like stage to study MS pathology, the process of myelination, and potential novel therapies for MS. (Read more about research involving skin cells.)The study is led by Dr. Jody Corey-Bloom at the University of California, San Diego (UCSD) MS Center and Dr. Rusty Gage at the Salk Institute in La Jolla, CA.
The Study: Investigators are recruiting MS patients who have a parent with MS and a non-affected sibling. Subjects will be asked to donate a small skin punch biopsy from the hip, administered using a 4 mm-blade following local anesthesia. The study would involve a one-time visit. There is no cost to participate in the study, and participants can reside anywhere in the United States as long as they are willing to travel to San Diego to enroll in the study. There are no exclusionary criteria based on age, gender, race, or ethnicity. Persons exhibiting bleeding difficulties, receiving anticoagulation therapy, or who are allergic to the anesthetic involved in the skin biopsy procedure, will be excluded.
All participants are assigned a unique study identification number to ensure complete confidentiality.
Contact: For more information about this study, please contact
Jody Corey-Bloom, MD, PhD
**Email (preferred for more rapid response): email@example.com
Researchers recruiting 5,000 first-degree relatives of people with MS for genetic/environmental research study
Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age.
Read more about this study.
Researchers in California studying MS in Hispanic population
Investigators at the MS Comprehensive Care Center at the University of Southern California are examining the genetic clues linked to geographical origins that may be responsible for the clinical characteristics observed in Hispanics with MS. They are recruiting 300 individuals of Hispanic/Latino background. Participants will be asked about their ancestry and clinical characteristics via in-person questionnaire. A single blood sample for gene typing will also be obtained and sent for analysis. Participation is usually a single visit. This is an observational study. No drugs or interventions are used in this study.
For information, please contact contact the MS Center at (323) 442-6870 or firstname.lastname@example.org.
Multiple sclerosis and pregnancy
The MotherToBaby's Autoimmune Diseases in Pregnancy Project conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated at the University of California, San Diego is following pregnant women with multiple sclerosis and other autoimmune diseases.
Through phone interviews, researchers are evaluating the possible effects of multiple sclerosis, and/or the medication to treat it, on pregnancy outcome, including a child's physical and developmental growth. Taking part in a study would NOT require a participant to change anything about her normal routine, including taking her prescribed medications. Participation contributes important information about the effects of diseases and medications on pregnancy outcome.
To participate, fill out the secure online referral form on PregnancyStudies.org.
For more information, call the MotherToBaby Pregnancy Studies toll-free number: 877-311-8972.
Vocational accomodations and MS
Investigators at the University at Buffalo are conducting an online longitudinal survey of individuals who have MS and are currently working. The goal of this research is to help patients identify possible vulnerabilities that may create employment problems. In this survey, participants will be asked about their work activities and problems they may have encountered. The entire survey will take less than 15 minutes to complete. Participants are being asked to complete the survey every few months so that any changes in
employment status can be confidentially identified. There is no direct compensation for this study.
For further information, please contact email@example.com.
Click here to go to the survey.
Impact of social support on the quality of life of spousal caregivers of people with MS
Researchers at the University of Buffalo, SUNY are investigating the quality of life of spousal caregivers of people with Multiple Sclerosis. If you are a caregiver who has a spouse with Multiple Sclerosis, you are invited to participate in this research study in understanding the factors that contribute to the quality of life of caregivers who have a family member with Multiple Sclerosis. The aim of this study is to reinforce a need for more programs dedicated to caregivers of people with MS as well as lend itself to the creation of more support-based resources for them. The survey takes approximately 45 minutes to complete.
Click here to fill out the survey.
For further information, please contact Camille Simonetti at firstname.lastname@example.org.
PML registry and information for patients
Progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) has occurred among people who have used Tysabri® (natalizumab, Biogen Idec) after it became available for prescription in July 2006. (Read more here.) TheNational Institute of Neurological Disorders and Stroke of the National Institutes of Health has created a website that contains information on PML for patients and their families. It also has a section that is a disease registry, where health care providers (after they request a password) can securely enter anonomyzed data that can then be used by different researchers to further understanding of the disease.
Read more at https://pmlregistry.ninds.nih.gov.
Rehabilitation of intention tremor in MS (Wisconsin)
The Integrative Neural Systems Laboratory at Marquette University is seeking subjects to participate in a research study to examine avenues for rehabilitation of intention tremor in multiple sclerosis.
Seeking healthy participants over 18 years old with normal or corrected-to-normal vision
Seeking participants with MS over 18 years old and moderate to severe intention tremor
Time Commitment: up to six 2-3 hour sessions over 3-4 weeks
Compensation will be provided.
Participants will be tested on a series of tracking tasks using a robotic handle to examine how movement control changes under different visual conditions.
The outcome of this study will improve understanding of the factors that contribute to intention tremor in MS and may provide insight into therapies to reduce intention tremor.
For additional information, please contact Scott Beardsley, Ph.D. (Principal Investigator) at 414-288-4448 or Megan Heenan (study representative) at 414-288-1592.
Inhibikase Therapeutics is developing a new treatment to remove the virus that causes PML in patients taking medications for their MS. If you are a survivor of PML (progressive multifocal leukoencephalopathy, a rare viral infection of the brain that often leads to death or severe disability) who contracted the disease following treatment with natalizumab, Inhibikase Therapeutics would like to involve you in a study to evaluate the quantity of JC polyomavirus in your urine using a simple home test and to obtain a limited amount of information related to your JC polyomavirus antibody level and length of treatment with natalizumab. Please contact Dr. Milton Werner, Inhibikase Therapeutics, Inc. at email@example.com for further information.