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.
The 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 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.
Doctor-patient relationships and experiences adjusting to Multiple Sclerosis (the dreaMS Study)
Researchers at University at Albany, SUNY are recruiting people being treated for multiple sclerosis for a study to learn more about doctor-patient relationships and experiences adjusting to this disease. Participation involves an anonymous and confidential questionnaire. The questionnaire is online and it should take about 45 minutes to finish. Participants are eligible for a prize-drawing to receive compensation in the form of an Amazon gift card. The responses on this questionnaire may ultimately help to improve the quality of the medical care that people with multiple sclerosis receive. To fill out the questionnaire, please visit the secure study website at www.surveymonkey.com/dreaMSstudy. For more information, please contact Elizabeth Persons Raffanello, MPH, who is the study's Primary Investigator, at email@example.com.
Having a parent with MS (Arizona)
The purpose of this study is to understand the lived experiences of having a parent with multiple sclerosis. Participants will meet with the researcher for an interview that will last approximately 1 ½ to 2 hours. The interview will be transcribed within a week. At that time, the researcher will contact you to set up the second meeting. This meeting will last approximately 30 minutes to 1 hour, for you to review the content for accuracy and clarification. Participation in this study is voluntary. Any information you provide will be kept confidential.
To participate or for more information, please contact Patricia Hoffman at 1-520-678-8382 or firstname.lastname@example.org.
Injection Preference Survey
People with MS and caregivers are invited to take a 5-10 minute, anonymous, web survey to provide input toward development of improved devices for injecting MS medications. The survey will ask you to compare a series of design features and select the one that’s most important to you. No names, addresses, or other identifying information will be collected, and you will not be contacted as a result of your participation. The survey is being conducted by Battelle, the world’s largest nonprofit research and development organization.
Click here to take the survey. If you have questions, please contact Cathy Colvard at 919-544-3717, ext 113.
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.
California Study: Differential Hippocampal Vulnerability as a Mechanism for Major Depression in MS
Researchers at Cedars-Sinai Medical Center, Thalians Mental Health Center in Los Angeles, CA, are seeking to determine if similar patterns of brain changes are found in people with depression alone and people with depression in combination with MS to help target therapies to address depressive symptoms of MS. They are recruiting and studying a total of 120 individuals over a three-year period. There will be four groups, each with 30 subjects: major depressive disorder (MDD) alone, MS alone, MS+MDD, and health controls. The study includes three visits and subjects will undergo the following procedures: medical screening (medical history, neurological exam, and questionnaire), cognitive/neuropsychological testing, MRI scanning and provide saliva samples. No drugs or intervention are used in this study. Participants are being compensated. To participate, please contact Julie Pham, (310) 423-8041.
Caregivers of Spouses/Partners with MS Study
Researchers at the University at Albany, SUNY are recruiting anyone who is the spouse/romantic partner of someone with MS to learn more about these special caregivers. Spouses/partners of someone with MS who provide any care, and can take a brief, anonymous survey are eligible. The survey will take about 40 minutes to complete. Participants can enter to win a prize. Participation may ultimately help to explain how MS affects couples and lead to improved support for spousal/partner caregivers.
Call 518-442-4684 or e-mail firstname.lastname@example.org with any questions or to take the survey over the telephone.
Click here to take the survey online.
Young Caregivers Study
An investigator at Towson University is conducting a research study investigating the effects of early caregiving experiences on adult mental and physical health. Individuals recruited for this study are U.S. citizens aged 18 years or older who have provided hands-on care (i.e., bathing, dressing, feeding, medications, etc.) to a parent or adult relative when the caregiver was under 18 years old, or is currently caregiving for a parent or adult relative while between the ages of 18 and 25. The study requirements include a three-minute phone or email interview to determine qualifications, and, for those who qualify, a packet of questionnaires on early caregiver experiences, and adult mental and physical health, which is mailed to participants' homes. The packet of questionnaires takes 40 minutes to complete, and it can be returned in the self-addressed stamped envelope provided. Participants will be compensated for completing the questionnaire packet.
For more information or to participate, contact Dr. Kim Shifren at 410-704-6239 or email email@example.com.
Employment Study for Individuals Living With MS
Investigators at Seton Hall University are conducting a research study investigating the emotional and physical factors that may have an impact on an individual’s employment status, following a diagnosis of MS. They are recruiting US citizens between the ages of 25-50 who are diagnosed with MS, were engaged in paid employment at the time of MS diagnosis and are currently experience a relapsing-remitting course of MS. The study will require a maximum time commitment of 30 minutes from each participant. Participants will complete a demographic questionnaire and the following assessments: the Revised Stress Related Growth Scale, the Multiple Sclerosis Self-Efficacy Scale, the Career Self-Efficacy Scale and the American version of Guy’s Neurological Disability Scale. Participation in this study is completely voluntary and individuals may withdraw from the study without any penalty, at any time. To ensure anonymity, each participant will complete an anonymous on-line survey through Survey Monkey.
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.
Researchers Recruiting African Americans with MS and Family Members Across the U.S. for Genetics Studies
Investigators at the University of California, San Francisco, are recruiting African Americans with MS and their family members across the country for genetic studies. For one study, the team is looking for an African American family that has three generations of family members with MS, or a family with multiple people with MS within one generation. There is no cost to people who agree to participate. Read more about this study.
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.
What Triggers MS in Kids? Pediatric Network and Other Sites Recruiting for Study of Environmental and Genetic Risk Factors
Investigators nationwide are recruiting 640 children with early relapsing-remitting MS or CIS (clinically isolated syndrome, a single episode of MS-like symptoms) and 1280 children without MS or CIS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. Read more about this study.
University of Memphis Career Study
Investigators at the University of Memphis are conducting a study on career decisions for adults (age 18 or older) with multiple sclerosis. The study is examining how adjustment to the disease impacts career decisions, in order to assist in developing interventions to improve career decisions. The study can be completed online in 15 minutes. If you are interested in participating, please email firstname.lastname@example.org and type "study" in the subject line to obtain the link and a password.
Treatment preferences in people with relapsing-remitting MS
Oxford Outcomes is conducting research to understand patient preferences with respect to the potential effectiveness and side effects of treatments for people with relapsing-remitting MS (RR MS). They are seeking to recruit up to 400 people with RR MS who are residents of the United States, 18 years of age or older, have adequate written and oral fluency in English, and are willing and able to provide written informed consent
Eligible subjects will be directed to a secure web server which will host preference and demographic questionnaires. The questionnaires should take approximately 30-45 minutes to complete. Subjects will be compensated upon completion of the questionnaires online.
The preference survey will ask subjects to rate desirability of various attributes of MS treatments, such as potential side effects, effectiveness, and administration regimen, and to indicate their preferences among hypothetical MS treatments. The clinical and demographic questionnaire will ask patients about their MS treatment and management experience as well as a set of demographic questions.
For more information or to participate, please contact Alexis or Tina, toll-free, at 1-866-893-0282, or e-mail Alexis at email@example.com.
Study of Functional Performance in MS Enrolling in Philadelphia
Drexel University in Philadelphia is conducting a research study examining the performance of everyday activities such as using a telephone, paying bills, and driving in people with MS. They are currently seeking research participants between 21 and 60 years of age who have had a diagnosis of MS for at least one year. Participants need to come to Drexel University for 1 visit lasting approximately 5 hours, and will be asked to complete some paper and pencil tasks, computer tasks, and drive a virtual reality driving simulator. At the completion of the study, participants will be compensated.
All information is confidential and strictly used for research purposes only. To participate, or for more information, please contact Maria T. Schultheis, PhD, at (215) 895-6105, or email Dr. Schultheis at firstname.lastname@example.org.
Promoting the Health of Cancer Survivors with Pre-existing Functional Limitations
Dr. Heather Becker at the University of Texas at Austin School of Nursing is studying health promotion among cancer survivors who had a prior disabling condition. The team is seeking to recruit 150 people nationwide who had a diagnosis such as MS prior to their cancer diagnosis and have completed active treatment for their cancer. Compensation will be provided upon completion of the mailed survey.
Participation is voluntary and information gathered is anonymous and will be kept confidential. The information you provide will help health care providers work more effectively with survivors such as yourself.
If you would like to participate, please contact Dr. Becker at 1-800-687-8010 or email@example.com.
Quality of Life in People Using Catheters for Bladder Problems
Investigators at the University of Pittsburgh are gathering data related to general health related quality of life among people using intermittent catheterization to manage chronic urinary retention. Data will also be collected to describe complications that these patients have experienced while using this intervention, the barriers that they perceive to implementing it, and their adherence to their prescribed catheterization schedule. Subjects for this study will be men and women older than 18 years who have been diagnosed with chronic urinary retention and who have either used intermittent catheterization in the past or are currently using intermittent catheterization to manage their bladder problem.
Participants will fill out questionnaires sent and/or administered via mail and phone, and will be compensated upon completion of the study.
For more information, please call 412-624-1210 or 888-351-9488.
"Hidden" Disabilities in College Students with MS
To tell or not to tell is a question faced by everyone with MS. Researchers at the University of Southern Maine are seeking to recruit 200 college students nationwide who identify themselves as having a "hidden disability" -- a disability that is not always seen or perceived by others. Participants will complete a survey that includes questions about demographic information, as well as questions about their experiences with disclosing their hidden disabilities in an educational setting, and the various supports from their educational environment that have helped them.
To participate, please email firstname.lastname@example.org, and the survey will be sent to you.