Surveys and Other Research Studies - National Multiple Sclerosis Society

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Surveys and Other Research Studies

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Overview

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.

Research Study about Rehabilitation Services to Manage Multiple Sclerosis Relapses (recruiting in Midwestern States)

If you had a MS relapse in the past 6 months, researchers from the School of Rehabilitation Therapy at Queen’s University in Canada would like to talk to you. They are talking with people with MS about their experiences with MS relapse and rehabilitation services that they used or attempted to use to manage relapses. Being in this study will involve one telephone survey. For more information, or to see if you are eligible, please call Dr. Miho Asano at 613-533-3407 or a toll-free number 1-855-533-3407.

Patients' Perspectives on Doctors and Pharma

Researchers at the University of Vermont, Oregon Health and Science University, the University of Colorado and Dartmouth are conducting a research study to understand MS patients' perspectives on relationships between their doctors and the pharmaceutical companies that develop new multiple sclerosis medications. In this study researchers are interested in MS patients' opinions about how physicians disclose financial relationships that the physician may have with a pharmaceutical company, especially as they relate to clinical research. This study is an online survey that takes approximately 15 minutes to complete. Responses to the survey are anonymous and no personal or identifiable information is requested. Any patient with MS is eligible to participate.

To complete the survey, please click on the link to http://www.surveymonkey.com/s/MSCOIsurvey

For any questions about the study, please contact:
Andrew J Solomon MD
Assistant Professor, Department of Neurological Sciences
University of Vermont and Fletcher Allen Healthcare
andrew.solomon@uvm.edu or (802)-847-4589

Treatment preferences

Participants are being sought for a research study regarding the treatment of multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosus. Researchers from California Northstate University's College of Pharmacy, located in Rancho Cordova, CA, are looking for participants for their research study. For this study, they are looking to enroll about 100 subjects who are 18 years old or older; have been diagnosed with either multiple sclerosis, rheumatoid arthritis, or systemic lupus erythematosus; have been regularly taking medications for their condition over at least the past six months; and are willing and able to provide their consent to participate in this online survey study.

If you volunteer to take part in this study, you will be asked to complete an anonymous on-line survey about your preferences for different treatment options for your condition. In addition, you will be asked to provide some basic demographic information and information regarding your past experiences with treating your disease. There are no questions that will specifically identify you. The survey will take approximately 25 minutes to complete and all responses will be kept strictly confidential. Your encrypted answers to the survey questions will be saved on a password-protected computer server; and will never be associated with you.

If you are interested in participating, please click on the link below or copy it into your browser: outpharmacy.co1.qualtrics.com/SE/?SID=SV_bJbFTgzgL2XcZhP

Cognitive function and pain

Investigators at Saint Leo University are conducting a research study on how cognitive function affects the experience of pain throughout all types of multiple sclerosis. Participants will be asked to fill out an anonymous online survey which is approximated to take 20 to 25 minutes to complete. Participants must be 18 years of age or older. All responses will be kept confidential and all identifying factors will be removed to ensure confidentiality. There is no direct compensation for this study.

To fill out the survey, please visit:  https://saintleo.co1.qualtrics.com/SE/?SID=SV_cOvcghiz8RZxelL

For further information, please contact tierra.willis@email.saintleo.edu.

Adherence and MS

Researchers at the Kessler Foundation Research Center and University of Missouri at Kansas City are recruiting people with relapsing-remitting MS who are not being treated for relapses to better understand reasons some patients with MS choose not to take medication. All participants will complete an online survey  lasting approximately 1½ hours. Following this, they will complete five 20-minute telephone conversations about MS medications. Finally, they will be asked to complete additional questionnaires at home at the completion of the study.

To be eligible, participants must: (1) be diagnosed with a relapsing form of MS and (2) have discontinued taking a disease modifying medication or never initiated treatment recommended by a healthcare provider.

To participate, please contact Sean O’Bryan at 816-235-5428 Ext. 1 or msmedfeedback@umkc.edu OR Juliane Armstrong, B.S. at 973-324-8457 or jarmstong@kesslerfoundation.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.

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 email arivers@albany.edu with any questions or to take the survey over the telephone.

Click here to take the survey online.

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.

Employment and Multiple Sclerosis

Researchers at the Kessler Foundation are interested in learning more about the factors associated with employment decisions in MS. Individuals who are gainfully employed OR those considering leaving the workforce or feeling as if they need to cut back on hours are eligible to participate. 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.

To be eligible, participants must be: (1) between the ages of 20 to 64; (2) diagnosed with definite MS; and (3) have no other neurological illness.

If you are interested in participating in this study and meet the above criteria, please contact Juliane Armstrong, B.S. at 973-324-8457 or jarmstrong@kesslerfoundation.org or Lauren Strober, Ph.D. at 973-324-8459 or lstrober@kesslerfoundation.org. You will then receive an email with a link to complete the study. You will be compensated for your participation.

Impact of social support on the quality of life of spousal saregivers 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 camilles@buffalo.edu.

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
Phone: 858-246-1288
**Email (preferred for more rapid response): jcoreybloom@ucsd.edu

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.

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 epersons@albany.edu.

Attitudes towards participation to MS clinical trials

Researchers at MS Centre at S. Raffaele Hospital, Milan are conducting a study on patients’ attitudes towards participation to MS randomized clinical trials. Recruiting patients is still extremely difficult and there are no studies from patients’ perspective in MS. Participation involves an anonymous and confidential online questionnaire aimed at evaluating the willingness of MS patients to join a trial, identifying factors that influence patients’ decisions and exploring patients’perspective on a wide range of recruitment strategies. The responses may help the design of future studies, thereby optimizing trial participation and study completion. The study is limited to those more than 18 years of age and who are diagnosed with MS. The questionnaire takes approximately 30 minutes to finish. Participation is voluntary and information gathered is anonymous and will be kept confidential. There is no direct compensation for this study.

For more information or to fill out the questionnaire, please contact maida.simona@hsr.it.

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 mscogsur@buffalo.edu.

Click here to go to the survey.

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: gloria.vongeldern@nih.gov.

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 kshifren@towson.edu.

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 Lilyana Amezcua, MD, at lamezcua@usc.edu, or Maura Fernandez, MD (coordinator), at  maura.fernandez@med.usc.edu, or call 323-442-6870.

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.

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.

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 866-893-0282, or email Alexis at alexis.french@oxfordoutcomes.com.

Painkiller Use and Beliefs, Attitudes Towards Painkillers

Investigators are aiming to measure the prevalence of painkiller use in the USA, Canada, Australia and New Zealand, and assess the role of beliefs and attitudes on the prevalence of painkiller use. More specifically, this research is interested in assessing the role of beliefs and attitudes towards pain as well as beliefs and attitudes towards painkillers. An online survey is being used to collect data for this research. The online survey will collect some demographic information from the participants and will ask them about their pain, their painkiller use and their beliefs and attitudes about pain and painkillers. The survey takes approximately 15-20 minutes to complete.

Click here for the survey.  

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 dlustig@memphis.edu and type "study" in the subject line to obtain the link and a password.

Survey regarding clinical trial of experimental therapy

Engage Health, a market research firm, is conducting an online survey of people with MS to help inform the design of a proposed early-stage clinical trial. People with MS who have an Expanded Disability Status Scale (EDSS) score ranging from 3.0 (moderate disability) to 7.5 (restricted to a wheelchair) are invited to take an anonymous online survey about a potential Phase 1 clinical study intended to evaluate the safety of an experimental therapy that may be tested for its potential to repair MS damage.

The survey will take approximately 10 minutes to complete and all responses will be kept strictly confidential.

Click here for the survey. 

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 schultheis@drexel.edu.

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 hiddendisabilitiessurvey@yahoo.com, and the survey will be sent to you.

For questions and comments contact please contact Julie R. Alexandrin at jalexandrin@usm.maine.edu or Ilana Lyn Schreiber at ischreibe@hotmail.com.

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