Surveys and Other Research 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 below.

If you would like us to post a study on these pages, please email studies@nmss.org to find out what information you need to submit for review.

Brain-computer interfaces (BCIs) use sensors to record brain activity and translate that activity into commands, which can be used to control a device. This project project aims to understand what people with MS would like to see in a BCI so that it is most beneficial to them. The 10-15 minute survey below asks participants to describe their experience with MS and review a range of potential BCI systems.
 
Inclusion criteria: Participants will need to be over 18 years old, have been diagnosed with MS and have no cognitive impairment.

Survey link: https://melbourneuni.au1.qualtrics.com/jfe/form/SV_a2wXL9E333iJGNo
 
For information, please contact:
Kirill Kokorin
PhD Candidate | Department of Biomedical Engineering
The University of Melbourne
kkokorin@student.unimelb.edu.au

Seeking informal MS caregivers to take part in an important online survey.
If you are caring for a loved one with MS, you are invited to participate in this research study to examine the impacts of informal caregiving and social support on stress among caregivers of persons with multiple sclerosis.
 
As a participant, you will be asked to complete an online survey which should take about 10 minutes to complete. All data will be treated as confidential. Your participation is completely anonymous, and no information regarding your identity will be collected for research purposes. 
 
Inclusion Criteria:
• You must be at least 18 years old.
• You must have provided unpaid caregiving assistance for a loved one (e.g., family member or friend) for at least 6 months.
• The recipient in your care must be diagnosed with multiple sclerosis.
 
If you would like to participate in this research study, please click on the survey link below.
 
Survey Link: https://utrgv.co1.qualtrics.com/jfe/form/SV_02gU1onP4dqtKsK
 
If you have questions related to the research, please contact the principal investigator: Jacqueline Mercado, by telephone at (956) 353-0091 or by email at jacqueline.mercado01@utrgv.edu. 

A graduate student in Biomechanics and Movement Science (BIOMS), Ph.D. Program at the University of Delaware is conducting Community Engagement Research this summer, studying the effects of hip pain and hip/postural stability factors on balance control in people with MS and Rheumatoid Arthritis. The primary purpose for the focus group study is to assess how physical, and cognitive symptoms and mental experiences were encountered during the pandemic. The project seeks to evaluate the role of hip and lower body pain and associations between balance, trunk, and hip stability challenges.
 
If you are between the age range of 35-75 years of age and with a physical disability that affects chronic pain, walking with or without assistive devices (i.e., cane, wheelchair, etc.), postural, core, and lower body stability, and balance symptoms, then you may be eligible to participate in a focus group research study.
 
The project seeks to implement 1 focus group (60-90 minutes) and 1 structured interview session (60-90) minutes as a formative assessment. Your participation requires 1 focus group and 1 structured interview session for a total duration of 120-180 minutes. In addition, you will be asked to complete 1 online post-survey. The survey asked 10 question items and will not take on average more than 50 minutes (5 minutes for each question). The online surveys are not timed. Before the focus group discussion, you are expected to complete a health questionnaire survey to determine eligibility. During the focus group and interview, you will be asked 10 open-ended questions.  

The study focuses on balance, postural and hip stability, and chronic pain impacts and collaborates with participants in designing an accessible virtual physical activity program for addressing activity preferences and key targeted goals.

In addition, participants will offer recommendations for balance and postural stability programs. If interested, please contact Rachel DeLauder,  MA, BS, by phone at (919)-530-0856 or email at rdelaude@udel.edu.
 

Researchers at the University of Alabama at Birmingham (UAB) are interested in learning the effect of expressive emotional writing on emotional well-being and activity participation in adults living multiple sclerosis (MS)
 
Inclusion criteria were:
(1) community-dwelling adults (aged 18 years or older)
(2) a confirmed diagnosis of multiple sclerosis (MS)
(3) able to communicate verbally or through writing in English
(4) access to a computer or smartphone and home internet
 
Participants will engage in ten 60 minute weekly on-line expressive emotional writing sessions via Zoom and completion of questionnaires along with an exit interview.
 
If you are interested or want to know more, please contact Jessica Hawkins at 205-975-2882.

Researchers at Google are conducting online, remote interviews to gather feedback about a new symptom reporting app for people living with MS. Researchers would also like to learn about ease of use, understanding, and general feedback on the new app.

Who

• More than 18 years old and diagnosed with MS

• We welcome everyone to apply, but we would be particularly interested in hearing from those who identify with communities that are historically underrepresented in medical research, such as Black, Indigenous, those from rural communities, LGBTQ+, and/or live with a disability.

• Currently living in the United States.

• Have an Android or iPhone mobile device.

What to expect:

• If you are interested in taking part, please complete this one-time online survey to see if you qualify for the study using the following link:

• https://docs.google.com/forms/d/1V52U64skuEnln2aIbA-NIrZ9ZaSkCNFvpzqBYbjwDtA/edit?ts=646cedeb&pli=1

• If you are selected to participate, you must be willing to download the usertesting.com app, and the new MS Signals app on your personal device and participate in a 1 hour, remote, user research session. Sign ups will be considered until August 15th, 2023.

This initial survey will take between 5 and 10 minutes to fill out. If you have any questions, please contact the study team at ms-signals-uxr@google.com, or kkauer@google.com.
 
Your identity will be kept confidential and only shared with those working on the MS Signals app project. If interested, participants can also participate in a 2-3 week diary study where we gather feedback on how you would use the MS signals app in your daily lives. Participants who qualify for the study will receive compensation.

Researchers from the University of Toronto are conducting research about the workplace experiences of people with invisible disabilities, including MS. This online survey involves answering questions about your opinions surrounding disclosure (disclosing you have MS) in the workplace. The only requirement to take part is that you have MS, you do not need to be employed to participate.
 
The survey will take you approximately 20 minutes to complete. Your participation is voluntary and the survey is anonymous.
 
If you are interested in taking part in our survey, the link is available below:
 
https://rotman.az1.qualtrics.com/jfe/form/SV_0D0g62PBHyOlMgK
 
Please feel to reach out to the primary researcher, Chloe Kovacheff at the Rotman School of Management, University of Toronto (chloe.kovacheff@rotman.utoronto.ca), with any questions.

Researchers at the University of Strathclyde (Glasgow, UK) are conducting a research study about communication problems in people with progressive motor conditions such as MS. It is well understood that people with progressive motor conditions will experience challenges with their communication at some point. This survey aims to find out what these are and what impact they have on daily life. This will add to our knowledge of which challenges impact most on people, and therefore, what researchers need to focus on in future studies into how best to treat communication problems.

Who can participate?
People with more than 18 years old and diagnosed with MS
People who feel that their communication has changed as a consequence of MS

What to expect?
You will fill out an online survey with questions about your condition. This survey asks primarily about your communication and how it has changed as a consequence of your condition. In addition, we would like to know a bit more about your movements, thinking skills and your mood to put your communication difficulties into context. We will ask you to select which of the difficulties you experience in your daily life, how severe or frequent they are, and also how they impact your quality of life.
 
During this study, you will be asked to complete multiple-choice answers, but you also have the opportunity to add some free text if you would like. The questionnaire is completed online, using a website called Qualtrics. It should take about 15 - 20 minutes to answer all questions.
 
The survey is available online here:
https://hass.eu.qualtrics.com/jfe/form/SV_cZ0vmRZA019JTdY

If you have any questions please contact: Prof Anja Lowit, by email (a.lowit@strath.ac.uk) or phone (Tel 0044 7986080537).

Liberating Research, a healthcare market research company based in London, UK, is currently running a study on MS on behalf of a pharmaceutical company to learn more about the journey of people with MS.
 
Who?

• People aged 18-55 with MS

What does it entail?

• Participants would be asked to complete a 60 minute remote interview and a short 30 minute online task before it. They will be compensated for the interview and the short task upon completion.

 How to participate

• Participants interested in participating, please follow this link:  https://www.liberatingresearch.com/projects/206 and sign up to the website.
• Once you sign up, a team member will call you to ask you some eligibility questions (5-10 min). If your profile matches the study, you will then be scheduled for the interview and give you more information about the online task. Once you do the interview and complete the task, you will receive the incentive.

If you have any questions please contact Michela michela@liberatingresearch.com or Shima shima@liberatingresearch.com

Researchers at Massachusetts College of Pharmacy and Health Sciences are conducting a research study about the MS Toolkit for Academic Success, and need user feedback on the toolkit for the study.
 
If you are a college student with Multiple Sclerosis, they would like to hear from you about the usefulness of this toolkit.  Please review the MS Toolkit for Academic Success.  At the end of the Toolkit, you will be asked to please scan a QR code to take a 5 – 10 minute voluntary survey about this MS Toolkit for Academic Success.
 
Inclusion Criteria:  Adults (18 yo or older) with Multiple Sclerosis who are attending college or who are planning to attend college.
 
Exclusion Criteria: Unable to read or speak English
 
If this study sounds like it is a good fit for you, please review the MS Toolkit for Academic Success at this link: https://docs.google.com/presentation/d/10BOleXjigEfLf_3vjLqpeMHXV0e1kA2RnnzRC1_W8F0/edit?usp=share_link
 
Or email the Principle Investigator, Erin Faraclas, for a PDF copy of the MS Toolkit.
 
If you have any questions please contact:
Principle Investigator: Erin Faraclas, PT, DPT, PhD
Multiple Sclerosis Certified Specialist
Email:  erin.faraclas@mcphs.edu

Researchers at Washington University School of Medicine are looking for participants who have been diagnosed with MS and are referred to physical or occupational therapy to address problems with arm and/or hand function. 
 
People with MS may qualify if they:

• Have sensory or motor problems with one or both arms or hands.
• Have a referral to physical or occupational therapy to address the problems in their arm(s) or hand(s). 

Participants will be enrolled for 3 months, with enrollment starting around the time their physical or occupational therapy starts.  At the time of enrollment and at 2 times thereafter, participants will complete questionnaires and wear movement sensors (like large wrist watches) on each arm.  The study can be done fully remotely, since the questionnaires can be completed online and the sensors can be mailed to participant homes.
 
Participants will be compensated for their time and effort.  If interested, please email us at PT-LangLab@email.wustl.edu or complete the secure online interest survey at https://redcap.wustl.edu/redcap/surveys/?s=FAYHFPXAFT

Researchers at Cardiff University are conducting a study which proposes a new technique for people affected by dysarthria (slurred speech) to interact with virtual home assistants such as Google Home and Amazon Alexa. The proposed technique overcomes dysarthric users’ communication difficulties and enables them to use these devices with non-verbal sound cues. We would like to answer how using nonverbal voice cues will improve the interaction with the virtual home assistants.

Currently we are conducting a pilot study to test the system developed. We are seeking participants to take part in this study with the following criteria:

• Aged 18+ and diagnosed with dysarthria (mild-moderate).
• Do not have any other medical condition that affects language production (e.g, aphasia).
• Have the capacity to give consent.

The system testing is conducted online. If you are interested, please fill in the form in the link below or email us at jaddoha@cardiff.ac.uk

https://forms.office.com/r/pQNaNaSS3s
 

Dr. Katz Sand and Dr. Sumowski at the Corinne Goldsmith Dickinson Center for MS at Mount Sinai Hospital are looking to recruit persons without MS as control participants for a research study on diet and cognition. Friends and family members of persons with MS would be ideal control participants, but any adult aged 18 to 85 without MS can participate. Please feel free to forward this information to anyone you think might be interested in participating. The study involves 20 to 30 minutes of electronic questionnaires (e.g., diet survey) and then 45 to 60 minutes of cognitive tasks over Zoom (e.g., memory tests).

Anyone interested in participating as a control subject for this study should e-mail Dr. Sumowski at james.sumowski@mssm.edu and our research coordinator Emily Dvorak at emily.dvorak@mssm.edu.

A graduate student from the University of Wisconsin-Stout is looking for participants who have been diagnosed with MS in the US. Research is being conducted to look at the relationship between vitamin D intake among people with MS and disability status. The survey takes less than ten minutes and consists of demographics, vitamin D intake, a food-frequency-questionnaire, and a rating scale. The survey can be accessed from the link below and all answers are anonymous. Please reach out by email to dickmanns2996@my.uwstout.edu for any questions.
 
https://uwstout.qualtrics.com/jfe/form/SV_9MEEeNsqaB3TF0q

Researchers at Drexel University are currently recruiting subjects for a study to better understand fatigue in MS. The study is completely online. The primary goal of the research study is to better understand how reward and effort affect fatigue levels in individuals with MS – specifically cognitive (mental) fatigue.
 
They are seeking individuals with MS (any subtype) in the US between the ages of 18-65 with no neurological conditions. You will complete demographic questionnaires, surveys, and an online task that could take anywhere from 10 minutes to 1 hour (all in one session). You will be compensated for your time.
 
If interested, please contact Fareshte Erani and cognewlab@gmail.com.

National Institutes of Health researchers are looking for people with advanced MS to study if genes cause loss of neurological functions

People with Multiple Sclerosis may qualify if they:

• Use a cane and are younger than 36 years (female) or 31 years (male)
• Use two canes or a walker and are younger than 38 years (female) or 33 years (male)
• Can't walk and are younger than 39 years (female) or 34 years (male)

Participants will be studied at their home. They will need to share with the researchers their medical records and brain MRI images. Researchers will examine participants’ neurological functions by simple smartphone tests that take 30-60 minutes (smartphone will be provided). Participants will collect --  with minimal discomfort -- cells from inside of their mouth using a brush and a small amount of blood from their arm using a device that attaches to their skin. The researchers will analyze genes and proteins from these samples to determine if changes in genes and proteins affect MS progression.

Participants will be compensated for their time and effort.

If interested, call 301-761-5333 for more information, or email ndsgroup@mail.nih.gov. 

The University of Illinois at Chicago, Physical Therapy department is conducting a survey study. The survey is about the user perspective of a new fall prevention method "perturbation-based balance assessment and treatment". There are several devices to induce the perturbation. The online survey aims to explore the user knowledge and perspective of these devices.  
 
The researchers are recruiting 4 populations: 

1.     Healthy older adults (60 and above)
2.     People with neurological disorder 18-90 (such as MS, Parkinson’s, stroke)
3.     People who perceive themselves at risk of fall. 
4.     People who have been diagnosed with any balance disorders. 

If you are in the Chicago land area, you will be given the opportunity to come to the lab and try out the available devices. At the end of the online survey there is a space for your contact information if you choose to visit our lab. If you choose so, you will be contacted for further details. Also, upon your visit, you will be compensated.
 
The Survey link: User Survey For New Fall Prevention Method
 
Please contact Nowf (Nina) Alfallaj nalfal2@uic.edu if you have trouble accessing the survey, or for any further explanation. 
 
The study is under the supervision of Dr.Tanvi Bhatt. 

The MotherToBaby Aubagio® (teriflunomide) & Pregnancy Study is being conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated by the University of California, San Diego.

This study is observational, which means women who enroll will not be asked to take any medications or vaccines or change any part of their routine. Women who qualify for this study, will not only have the opportunity to interact with our expert staff who can provide additional support during their pregnancy, but they will also play a key role by helping us learn more about MS during pregnancy, and the safety of medications during pregnancy for their own benefit and the benefit of other pregnant women and their babies in the future.  

Women may qualify for this study if they are currently pregnant and:

• Have been diagnosed with MS
• Have taken/are taking Aubagio® or have chosen not to receive treatment

To learn more about participation in the study please call 877-311-8972, email MotherToBaby@ucsd.edu, or visit our website at MotherToBaby.org 

Researchers at the University of Pittsburgh are conducting a long-term, prospective, observational research study to understand what makes individuals with MS and related disorders differ from one another. Specifically, they aim to investigate the predictors of the individual differences in disease trajectory and treatment response using a wide range of biological, biometric, imaging, environmental, and clinical measurements.  Understanding the factors that influence disease trajectory and treatment response will pave the way to realize precision medicine and deliver individualized care. 
 
Eligibility:

1. 7 years and older
2. Diagnosis of multiple sclerosis or related disorders 

Minimal Requirement:

• Answering questionnaires online, by phone or in person
• Allowing the review of medical records. 

If you are interested in learning more, please contact the research coordinators by phone at 412-254-4883, or by email at msstudy2@pitt.edu.

elevateMS is an iPhone app-based study designed to monitor and understand the variations in symptoms of Multiple Sclerosis or MS. Living with MS disease means coping with symptoms that may change daily. Yet these daily changes may not be tracked frequently enough. The elevateMS app will use questionnaires and sensor data from your phone, to help you track your condition 24x7, allowing you to review trends and share this information with researchers. elevateMS is run by Sage Bionetworks, a nonprofit research organization in collaboration with Novartis Pharmaceuticals Corporation.
 
Key Features:
●      Innovative activity-based measurements of MS symptoms that include walking few steps and finger tapping
●      10 minutes/week committment
●      Share insights with researchers
●      Get educated about symptom variations

Researchers are looking for participants who meet the following criteria:

• 18 or older
• U.S. resident
• Have a personal iPhone (iPhone 4S or newer). The app requires iOS 8.0 or later, and is compatible with iPhone and iPod touch.

For further information on this study, please visit our website at www.elevatems.org.
 
For question or concerns, please email elevateMS@sagebase.org or call toll-free 1-844-822-4707 or 206-667-2103.

Researchers from Central Michigan University are very interested in learning from college students of any age with MS. The purpose of the study is to learn about the techniques used to manage the college lifestyle and feedback regarding the effectiveness of various resources.

This is an anonymous online survey that will take approximately 10 minutes to complete.
 
https://www.surveymonkey.com/r/CollegeMS
 
If you have any questions or would like more information, please contact Dr. Holly Hoffman at gerki1hh@cmich.edu or 989-506-9651. Thank you!
 

REAL MS™ (Research Engagement About Life with Multiple Sclerosis) is a longitudinal, prospective study (that is, it will collect repeated observations of the same variables from now over a long period of time) of a cohort of people with multiple sclerosis (that is, it will study a group of individuals who share the characteristic of living with MS). It is designed to answer important questions about the heterogeneity of the experience of MS across the population of people who are living with the disease and about the factors that affect MS progression and treatment outcomes. The REAL MS™ study was initiated in August 2016 as the flagship research program of the iConquerMS^TM patient-powered research network. The study will collect comprehensive data about demographics, overall health, quality of life, MS symptoms and treatments semi-annually via online questionnaires, and will from time to time invite its participants to reply to surveys on particular topics and/or to contribute biospecimens.

Over the course of the study, REAL MS™ intends to enroll thousands of people living with MS who are as reflective of the MS population as possible. All adults 21 years of age or older who live with MS and register for iConquerMS™ are eligible to participate in the REAL MS™ study. 

Register for this study by joining iConquerMS
 

The Google Accessibility Engineering Team is looking for persons with disabilities to become testers of new Google products with the purpose of providing accessibility feedback to the engineering teams at Google.  If deemed a fit, participants in the program will have the opportunity to share their thoughts on new products, interact directly with teams at Google via email, phone and/or video chat, all while helping to make products more accessible.   

For the pilot program, which may last up to one year, Google is looking for tech-savvy users who are at least 18 years of age and reside in the U.S.  Anyone interested in the program should fill out this survey, which is also linked below. 

Have questions about the program? Feel free to contact google-accessibility-trusted-tester@google.com.

Sign up form link:  https://goo.gl/forms/eVlMN8pTOJOXhUN22

Researchers from Kent State University College of Nursing are seeking family caregivers of loved ones with serious illness such as MS for a caregiver registry. Enrolling in the registry is voluntary and allows researchers to contact you if a research study becomes available. Prospective registry participants must meet the following criteria:

• A caregiver for a loved one with a serious illness, such as MS
• Be age 18 or over

This registry has received ethical approval from the Kent State University Institutional Review Board (IRB). You can withdraw from the registry at any time.  To learn more about and to add your name to the registry, visit the website at https://www.kent.edu/caregiver/family-caregiver-registry.

For more information, you can contact the researcher at dhansen1@kent.edu.

People with MS are invited to participate in a research study entitled, “Falls and Fear of Falling in Adults who Require Wheelchairs for Locomotion.” The purposes of the study are to determine 1) if fear of falling predicts the number of falls that occur in adults with neurologic conditions who use wheelchairs full-time for mobility inside and outside their homes, and 2) the incidence, circumstances, and consequences of falls for these adults.

To participate you must be an adult who:

• Is at least 18 years old
• Has a neurological diagnosis (such as multiple sclerosis) for at least 6 months
• Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
• Has a computer with internet access.
• Is able to read and understand English.

If you are interested in completing an anonymous on-line survey about your medical condition, falls, risk of falling, and fear of falling, please click on this link: https://www.psychdata.com/s.asp?SID=183112

It will take you up to about 20 minutes to complete it. People who complete the survey will be eligible for a prize drawing.

People who live in the greater Houston area and agree to be contacted for in-person testing of 1 transfer in/out of their wheelchairs and sitting balance will be compensated after consenting to and completing this testing that requires no more than 1 hour.

Please contact Carolyn Da Silva, PT, DSc at cdasilva@twu.edu or 713-794-2087 for more information or questions. She is a professor in the School of Physical Therapy at Texas Woman's University and physical therapist at the post-polio out-patient clinic at TIRR Memorial Hermann Rehabilitation and Research in Houston, Texas.