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Surveys and Other Research Studies

Researchers Need You!

Listed below are two opportunities for people with MS to move MS research forward, NARCOMS and iConquerMS™. These are separate efforts and there's no restriction to participating in both. Read more below.

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In this article

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.

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.

Online Survey: Understanding Mobility and Assistive Devices in MS

Researchers at University of Michigan are doing a survey to learn more about mobility and assistive devices. Researchers would also like to learn about barriers to obtaining the devices and overall satisfaction with those devices.
 
Who
  • More than 18 years old and diagnosed with MS
What to expect:
  • You will fill out an online survey one time on assistive devices, falls, barriers to obtaining your device, and satisfaction with your device using the following link:
https://redcap.link/mobi-ms
 
The survey will take between 20 and 30 minutes to fill out. If you have any question, please contact the study team at 734-232-4051 or roshay@med.umich.edu.

This nationwide survey is anonymous, and no one will be able to link your answers back to you.  Please do not include your name or other information that could be used to identify you. 

Participants who complete the survey can enter a drawing for compensation.
 

Massachusetts Research Study: Portable MRI

Researchers at the Massachusetts General Hospital are studying a portable MRI machine. Most MRI machines are extremely large, cost millions of dollars, and require specialized and expensive equipment to function. This portable MRI machine costs less than a traditional machine, operates quietly, and requires the electricity from a regular wall plug to work. The team hopes that, one day, the portable MRI technology could be used to treat patients with neurological disorders in rural, remote, or low-income areas around the world; however, they first must verify that the portable MRI can see the same things that a traditional MRI machine can for people with MS. Participation involves a one-time 30-minute scan in a portable MRI machine from the company Hyperfine. The appointment usually lasts about an hour, as screening forms are completed before the scan. 
 
Please contact Cristina at CTRAPAGAHACKER@mgh.harvard.edu for more information.

Online Survey: Stress Among Informal Caregivers of People with MS

Researchers at Cox College, Department of Occupational Therapy, are doing a survey to learn more about what current resources are being provided to informal caregivers of those diagnosed with MS and/or ALS. With your feedback, hopefully the field of occupational therapy can become more prevalent in assisting in care for both you (the caregiver) and your loved one.
 
Who
  • Informal caregivers of individuals with ALS and/or MS (present or passed within the last year)
  • Resident within the United States
  • 18 years of age or older
What to expect
  • You will fill out an online survey one time on demographic information, caregiver specific questions, stress levels, and use of mindfulness strategies.
Survey link - Understanding Stress Among Informal Caregivers of Multiple Sclerosis and Amyotrophic Lateral Sclerosis (google.com)
 
The survey should take about 15-20 minutes to fill out. This survey is anonymous, and no one will be able to link your answers back to you.
 
Thank you for your time and consideration in taking this survey! If you have any questions, please contact the study team maddicampbell25@gmail.com

Survey of parents with disabilities

Through the Looking Glass (an organization that provides disability community-based psychosocial, developmental, and parenting adaptation services) is conducting a national survey of parents and caregivers with physical and vision disabilities. The purpose of this survey is to help them find out the current strategies and supports that are used and needed by parents and caregivers who have physical or vision disabilities. They will use the information from this survey to develop resources and educational materials for parents/caregivers, occupational therapists, and other professionals. This survey is part of a larger study funded by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).

The survey is anonymous and should take between 15 and 30 minutes. Participants should be parents or caregivers of children ages 5 years and younger, and have a physical disability (including health conditions that cause pain and fatigue) or vision disability. The survey is available in English and Spanish. 
 
You can take the survey at:
https://redcap.link/TLGParentSurvey

If you have questions, you may contact the research team at
TLGresearch@lookingglass.org 

Racial/Ethnic Minorities with MS and Psychosocial Factors

This study will help researchers at Michigan State University better understand psychosocial factors experienced by racial/ethnic minorities with MS. The purpose of this research study is to examine psychosocial factors among racial/ethnic minorities with MS. If you would like to participate in this research study, you will be asked to complete a series of questionnaires consisting of questions that examine demographic, clinical characteristics, and psychosocial factors. The survey will take approximately 30 minutes to complete. The first 200 participants will be compensated for their participation. To participate in the study, please click on this link:
https://msu.co1.qualtrics.com/jfe/form/SV_5yGp9jsik5vPTQa

If you have concerns or questions about this study, please contact Beatrice Lee at leeyunpa@msu.edu.

Online Survey: College Students with Multiple Sclerosis

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

Remote Study: Using wearable sensors to measure arm and hand function

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

Yale (New Haven, CT) Seeking Close Relatives of People with MS for Study

Researchers at Yale University are looking for close family members of people with MS to help them discover the earliest immune system changes that ultimately lead to Multiple Sclerosis (MS).

Who can participate?
  • Close relatives (parent, sibling, child) of someone with MS
  • Age 18 or older
  • Willing to give a blood donation, answer some surveys, and continue to be contacted in the future
Participants will be followed on an ongoing basis. All participants give a blood sample, an oral swab, complete a health history, and complete some surveys at baseline. All participants are contacted periodically (up to 4x per year) on an ongoing basis for updated health information and to complete surveys (requiring about 10 minutes of your time). Participants may be invited to give follow-up blood donations (optional). Participants may be invited to give other types of biologic specimens (like stool, fat tissue, spinal fluid) (optional). Participants may be invited to have an MRI (optional). One in-person visit in the New Haven area will be required; subsequently, the study can be done remotely.

Participants will be compensated for any biospecimens or procedures. If interested, please email us at MSResearch@yale.edu or click on https://redcap.link/1i349cpa to complete a pre-screening survey.

Online Survey: Nutrition and Quality of Life

Researchers at The Chicago School of Professional Psychology (TCSPP) in Washington, D.C., are conducting a research study to examine diets and nutritional factors in individuals with MS and how these may influence their self-reported quality of life.

You may participate in this study if:
  • You are between 18 and 65 years of age
  • You have had a diagnosis of MS for at least six months
  • You were diagnosed with MS between 18 and 50 years of age
  • You do not have any other diagnosed neurological illness in addition to MS
  • You will be able to complete this survey independently, without the assistance of another individual
During this study, you will be asked to complete screening questions, an online consent process, and then a questionnaire about your dietary and nutritional habits as well as quality of life (including questions about function, such as sexual and bladder function).

The online study involves a questionnaire delivered through Survey Monkey and will require approximately 15 to 30 minutes to complete. Participation will be entirely voluntary. No direct personal identifying information will be collected, and e-mail addresses will be deleted through Survey Monkey prior to data transfer.

If you are interested in participating in this study, the link to the survey can be found here: https://www.surveymonkey.com/r/7MCZ8YR

For additional questions that you may have about this research initiative, please contact: 
 
Danielle M. Stone, MA, LGPC
dmedovich@ego.thechicagoschool.edu
 
Alison Fedio, PhD, PsyD
afedio@thechicagoschool.edu

Virtual Study: Slurred Speech

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
 

Remote Interview Study: Experience with Lemtrada

Researchers at Harvard Medical School and Brigham and Women’s Hospital are conducting a study on Risk Evaluation and Mitigation Strategy (REMS) programs run by the Food and Drug Administration (FDA). The project team is seeking to better understand patient experiences with and perceptions of these drug safety programs.

If you are a patient 18 years old or above who started taking alemtuzumab (Lemtrada)—a REMS-covered drug—in the last 3 years, you may be eligible to participate in a 60-minute phone interview. Patients who are eligible and complete an interview will receive a gift certificate as a token of appreciation.

To participate in the study, please email Dr. Ameet Sarpatwari at asarpatwari@bwh.harvard.edu with the subject heading "Patient Experience with Lemtrada" expressing your interest. 

Seeking Friends/Family of People with MS for Remote Study

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.

MS and Aging (NY/NJ/CT)

Purpose of the study
The goal of this research study is to evaluate how the brain is involved in walking in older adults with and without MS. The results will provide valuable new information about how brain structure and function affect the affect walking abilities and risk of falling. If successful, the findings may lead to possible new treatments that could improve brain control and efficiency of walking.

What is involved?
Participation begins with a telephone interview to see if the study is a good fit for you. If it’s a good fit, and you agree to participate, you will have two in-person study visits. The first visit takes approximately 3 hours. You will be asked to fill out some questionnaires, complete a few tests that assess cognitive functions (e.g., memory, attention), and participate in some walking and mobility tests. During this visit, using a non-invasive optic imaging technique that utilizes light properties, we will assess changes in brain function during active walking. The second visit is expected to be less than 2 hours and you will be asked to have one MRI (time in the scanner is one hour). The research team will gladly share the results of the MRI with your treating neurologist if you are interested. Both visits take place at Albert Einstein College of Medicine. The research team will arrange free private transportation to and from the research center for each visit. Participants will be compensated for their time and effort.

The research team strives to make your experience a positive one and has put in place several precautions to ensure your safety during the pandemic. The staff is vaccinated, always wear masks, and maintains appropriate distance. Study visits are conducted with only one person at a time.
\
Who can participate?
The researchers are looking for people who:
 Are at least 60 years of age
 Have been diagnosed with relapsing remitting MS (RRMS) or secondary
progressive MS (SPMS)
 Can walk 20 feet without assistance or with a single-point cane
 Have been on the same MS disease-modifying therapy for at least 6
months
 Meet additional study criteria

Interested in participating?
Complete this form to let the research team know of your interest. You can also call or email them at 718-430-3972 or holtzer.neuropsych@gmail.com

Ferkauf Graduate School of Psychology, Yeshiva University
Bronx, NY

Research Study for Individuals Planning to Become Pregnant with MS (NEW ENGLAND)

Researchers at Project Clio in Boston are recruiting individuals with MS that are planning to become pregnant for our Project Clio TCR: Pathfinder study. If you live in the New England area, have MS and plan to become pregnant soon, you qualify for our study. The goal of this research study is to better understand what is happening during pregnancy to cells inside the blood of people that have autoimmune diseases with the hope of finding more treatments. Participants of this study will give a blood sample before becoming pregnant, those who do become pregnant will give more blood samples during the first, second, and third trimester, and a final blood sample postpartum. Participants will be compensated after the first sample is given and upon participation completion.
 
To participate in our study please sign up through the link on our website at projectclio.org/joinastudy or email us at info@projectclio.org.
 

Remote interview study: Healthcare during the pandemic

Researchers at University of Pittsburgh Medical Center are seeking volunteers for a research study on care during COVID for people with disabilities.
 
The purpose of the study is to describe the barriers and facilitators to engagement in healthcare for people with disabilities during the COVID-19 pandemic. Additionally, we will explore how public health mitigation strategies (such as social distancing and mandatory stay-at-home orders) influence engagement in care and health-seeking behaviors (such as scheduling appointments and filling prescriptions).
 
You may qualify if you are:  
  • A person with a disability or a care provider for someone with a disability; and 
  • At least 18 years old.
Participation in the study involves one or two interviews (approximately 45-60 minutes). Interviews will be on the phone or on Zoom video conference. Participants will be compensated.
 
For more information, contact study staff at 412-396-1511 or email colbertam2@upmc.edu 

Online Survey: Mothers with MS and occupational therapy

This online survey study is being conducted by a group of four occupational therapy (OT) graduate students at California State University, Dominguez Hills. Occupational therapy is a client-centered, comprehensive, and holistic approach to rehabilitative care. An occupational therapist helps individuals engage in their meaningful activities (called occupations) through task modification, adaptation, and education. Specific examples of occupations include dressing, meal preparation, use of communication devices, care of children, medication management, and leisure activities.

The researchers’ correlational survey study is looking to educate OT practitioners on how to better support mothers with MS in their mothering occupations. Examples of mothering occupations include: diaper changing, meal preparation, bathing, and breastfeeding. The study aims to examine the relationship among satisfaction with adaptive equipment, social support, and perceived parental competence in mothers diagnosed with Multiple Sclerosis (MS). Adaptive equipment is any item, piece of equipment, or product system, whether acquired commercially, off the shelf, modified, or customized, that is used to increase or improve functional capabilities of individuals with disabilities. Social support is “the provision of assistance or comfort to others, typically to help them cope with biological, psychological, and social stressors. Support may arise from any interpersonal relationship in an individual’s social network, involving family members, friends, neighbors, religious institutions, colleagues, caregivers, or support groups” (APA, 2022). Parental competence is “the practical abilities parents have to nurture, protect, and educate their children, and to ensure them a sufficiently healthy development” (Reparaz et al., 2021). 

This particular survey is intended to be taken by mothers with MS and will take about 30 minutes to complete. 

To participate, you must:
  • Be between the ages of 18-70 years old
  • Be diagnosed with MS
  • Identify as female
  • Delivered/adopted a child within the last 40 years
Survey Link: https://forms.office.com/r/SFhDcqfq1Z
 
The survey is available for mobile or desktop! For more information, email the research team at: csudh.otmothering@protonmail.com.
 
References:
American Psychological Association (APA). (2022). APA Dictionary of Psychology. https://dictionary.apa.org/social-support
 
H.R.4278 - 108th Congress (2003-2004): Assistive Technology Act of 2004. (2004, October 25). https://www.congress.gov/bill/108th-congress/house-bill/4278/text
 
Reparaz, C., Rivas, S., Osorio, A., & Garcia-Zavala, G. (2021). A Parental Competence Scale: Dimensions and Their Association With Adolescent Outcomes. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.652884

Online Survey: Vitamin D Intake Among People with MS

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

Remote Study: Cognitive Fatigue

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.

Remote interviews: Pseudobulbar Affect

Researchers at Just-Worldwide and Branding Science are conducting a Market Research study regarding the Patient Experience of living with Pseudobulbar Affect ( PBA, uncontrollable laughing and/or crying)).
 
We are seeking participants for web assisted interviews (60 minutes) and Caregivers with Patients for Web assisted Dyad interviews (90 minutes). Qualified participants will be asked to complete an one-hour long Video diary assignment prior to their scheduled session. We are looking for respondents that are over 18 years of age and were diagnosed with PBA more than 6 months ago.  
 
Participation in this survey is completely voluntary and confidential.
 
If you are interested, you may access the screener for this project via the following link: https://forms.gle/x6ZM2bKKfrjcepF16.

There are limited spots available for this project and not everyone will qualify.
 
For more information regarding this project, please contact Kristen Saylor at Kristen@Just-Worldwide.com

Remote Study: Younger People with Advanced MS

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

Physical Therapy Program at University of Wisconsin-Milwaukee Seeking Participants

UW Milwaukee’s Doctor of Physical Therapy (DPT) program is recruiting participants with a diagnosis of MS to attend physical therapy treatment sessions with students. A faculty member or members will oversee and coordinate the program.

When:  Mondays and / or Wednesdays in October to early November 2021
  • Monday Time Slot 11am-3:30pm
  • Wednesday Time Slot 2-4pm
Where:  UWM Klotsche Pavillion: 3409 N Downer Ave, Milwaukee, WI 53211
and / or UWM Northwest Quadrant: 2020 E Newport Ave, Milwaukee, WI 53211
*virtual options available as needed based on up-to-date health guidelines
*wheelchair accessible facilities

Participants will be compensated for their time, including parking.

What: Weekly or bi-weekly sessions with supervised student physical therapists for individualized, evidence-based treatment (subject to participant schedule and availability)

Why:  To create valuable learning experiences for students in preparation for clinical work. Fostering relationships with members of the Milwaukee community and beyond to provide evaluation and treatment of neurologic impairments.

How do I find out more?  Please directly contact Caitlyn Anderson, PT, DPT, NCS, GCS at ande2847@uwm.edu or text / call 732-397-9953

Individuals with Relapsing-Remitting MS Wanted for a Research Imaging Study: (MA)

Participants are being recruited for a study looking at the expression of histone deacetylases (HDACs), which are proteins that are important for turning genes on/off, in the brain of multiple sclerosis patients and healthy individuals. Participation includes one visit to the Massachusetts General Hospital Martinos Center to answer questions about your medical history and medications, memory tasks, and for one MR-PET scan (up to 90 minutes).

In order to participate, you must:
• Be between 18 and 60 years old
• Be able to have an MRI and PET brain scan
• Have no known history of major medical, psychiatric, or neurological illness (except multiple sclerosis)

Location: MGH Martinos Center for Biomedical Imaging, Charlestown Navy Yard
Time Commitment: One visit of up to 4.5 hours
Participants may receive compensation upon completion of the study

This study is being conducted by Jacob Hooker, PhD. If you are interested in participating or would like more information please contact our study team by phone (617-643-4567), or e-mail (ImagingStudy@mgh.harvard.edu).

Zoom/Phone Interview: Experience with Acthar Gel

The Px Group, a patient engagement company, is working on behalf of a pharmaceutical company to learn more about the experience of people living with MS who have tried Acthar® Gel (repository corticotrophin injection). The Px Group is conducting 60-90 minute interviews over Zoom to learn more about the experience of people living with MS, focusing on challenges with disease control and Acthar Gel use.
 
To participate, individuals must be over 18, be living with MS, speak English, and have recent (within past 2 years) experience with Acthar Gel.
 
You will be compensated for your time. If you are interested, please contact Kyle at klasher@thepxgroup.com.

Zoom/Phone Interviews: Provide feedback on intermittent catheter use

Researchers at Aurie are interested in learning about how people living with MS use and choose their intermittent catheters and are conducting 30 minute interviews over Zoom and phone to learn more. 
 
Participation and Procedure:
-In order to participate, you must be over the age of 18, speak English, and use intermittent catheters to urinate.
-Interviews will last approximately 30 minutes.
-Participation is voluntary and participants can stop at any time. Participants will be compensated at the end of the interview.
-Interview notes will not be published, and will only be used to inform the design and development of a reusable catheter system.
 
If you would like to participate, please email souvik@livewithaurie.com.

Online Survey: Fall Prevention

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. 

Remote Study: Tiredness, body sensations, and emotions in people with MS

Investigators at the University of Georgia are conducting a survey and interview research study for people with multiple sclerosis (MS). This study can be completed remotely.
                This study seeks to examine a potential relationship between tiredness, body sensations, and emotions in people with MS who are physically active. You need to be 18 to 65 years of age with access to reliable internet and phone service to qualify. This study will take about 2 hours total of your time.
                If this is of interest to you, please contact Megan Ware to get started with surveys. Her email is mew77577@uga.edu and her phone number is 423-260-5045.
 

Survey: Patients taking Ocrevus (Ocrelizumab) and Rituxan (Rituximab)

Investigators at Harvard University in Boston are developing a clinical trial that aims to safely lower the doses of Ocrevus (Ocrelizumab)​and Rituxan (Rituximab) infusions in individuals diagnosed with Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO).

They are gathering opinions of individuals who are/were taking Ocrevus or Rituxan in a short 5 question survey that should take no longer than 2-4 minutes to complete.

If you were diagnosed with MS or NMO and are/were on Ocrevus please click this link to take the survey: Ocrevus Survey​ or copy paste this URL: https://www.surveymonkey.com/r/22NYNV2

If you were diagnosed with MS or NMO and are/were on Rituxan please click this link to take the survey: Rituxan Survey or copy paste this UR L:  https://www.surveymonkey.com/r/2NMFVL8

If you have questions, please contact: nrab@mah.harvard.edu.

The MotherToBaby Aubagio® (teriflunomide) & Pregnancy Study

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 

Prospective Investigation of MS in the Three Rivers Region (PROMOTE)

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.

MRI predictors of disease and disability progression in African Americans with MS - New York

Researchers at the Department of Neurology at the Icahn School of Medicine at Mount Sinai, Mount Sinai West are seeking volunteers of both African American and Caucasian ancestry 18 to 70 years of age to participate in a study to assess brain and spinal cord structure and function in people with MS using Magnetic Resonance Imaging. The purpose of the study is to find new ways to detect changes in the brain that may be associated with MS, and may help, in the future, to predict the course of the disease.

Participants will need to complete a study visit annually over a period of 4 years. Study visit will take approximately 3 hours. Eligible participants should have a diagnosis of MS, be fluent in English and willing to complete a study visit, including clinical examination and MRI annually over a period of 4 years. Study visits will take approximately 3 hours to complete. Participants will be compensated for their time and effort. They may also receive a CD with pictures of their brain and spinal cord. For more information email ingleselab16@gmail.com or call 212-824-9319 [GCO#; PI: Matilde Inglese, MD, PhD.

Workplace Experiences of People with Disabilities

Students at Emory University are conducting a research study designed to learn about workplace experiences of people living with disabilities, including multiple sclerosis. The goal of this study is to gather information on these experiences, to better understand how they affect employment inclusion, and to consider what solutions can help to cope with these experiences.
 
Participation involves a 6-minute survey. Below is the link:
https://bit.ly/AbilityInclusionXperience

If you want to get further information, please email abilityenabled@gmail.com

App-Based Study on MS Symptoms

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.

​Retinal Lutein and Visual Health in MS

Researchers in the Department of Kinesiology and Community Health at the University of Illinois in Urbana-Champaign (UIUC) and Carle Hospital are conducting a study to assess the relationship between nutrition and eye health among people with Multiple Sclerosis.  Participation consists of two visits, each lasting 2 – 3 hours.  Participants will be asked to complete surveys, eye exams, a neurological exam, a blood draw, and EEG computer tasks.  Participants will also be asked to record their diet for 7 days and wear an activity monitor for 7 days between appointments.  Participants will be compensated.

Inclusion criteria: ages 45 – 64, ambulatory with or without assistance, and not be diagnosed with age-related macular degeneration.

For additional information please contact Alicia at (217) 300-1667 or lumesuiuc@gmail.com.

College Students and Multiple Sclerosis: Navigating the College Experience

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™: Personalized Medicine Research in MS, and More

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 iConquerMSTM 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
 

​Mobility impairments and fatigue - COLORADO

Researchers in the Department of Health and Exercise Science at Colorado State University are exploring how differences in strength between the right and left legs may contribute to walking impairments and fatigue induced by walking in people with MS. The study will take place in the Integrative Neurophysiology Laboratory in the Department of Health and Exercise Science, on the Colorado State University campus. Two visits are required, during which tests will be completed including questionnaires, and tests to determine leg strength, handgrip strength, body composition, and walking impairments. Participants also will wear an ActiGraph to measure physical activity for seven days.
 
Click here for a screening form to determine eligibility

For more information, please contact Integrative Neurophysiology Lab at HES-inpl@colostate.edu or 970-491-7612.

Research Study for People with MS - Kent, OH

This research examines thinking ability and fitness in MS. To participate, individuals must be diagnosed with MS and be willing to participate in two testing sessions lasting approximately two hours each. 
 
  • Tests of thinking skills: You will be asked to complete a short set of pen/paper and question/answer tests that assess your ability to focus and sustain your attention, learn and remember new information, and other types of thinking skills. 
  • Questionnaires: You will also be asked to complete paper-and-pencil questionnaires. The questions ask about your personal characteristics (such as health issues) as well as your exercise habits, mood, symptoms of pain and fatigue self-efficacy, and how all of these affect your day to day life. 
  • Physiological Testing: Baseline levels of your height, weight, and waist to hip ratio will be recorded today. Heart rate, blood pressure, tympanic body temperature, and cerebral oxygenation will also be recorded. 
  • Functional Testing: You will be asked to perform some functional testing to determine your fitness level. These tests will assess your cardiovascular fitness, and mobility. 
  • Activity Monitoring: You will be asked to wear an activity monitor daily throughout the study. The monitor can be worn on your wrist, waistband, shirt, or in your pocket throughout the day.
 
If you are interested, please contact kent.ms.study@gmail.com or call 330-552-8277.

Effects of Feedback Presentation on Fatigue and Learning - New Jersey

Researchers at Kessler Foundation are interested in learning whether different types of feedback (assessments of one’s performance on a task) might lessen fatigue in MS. Participants will complete pen and paper tests (4 hours) then complete a multiple-choice task during an MRI scan (1 hour) at Kessler Foundation in West Orange, New Jersey. Compensation will be provided.
 
Eligibility:
  • Must be between 18 and 55 years old
  • Must have a diagnosis of Relapsing-Remitting MS.
If interested, please contact Nancy Moore at 973-324-8450 or nbmoore@kesslerfoundation.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.

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 mscare@usc.edu.

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.

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.

Provide Feedback on Accessibility to Google

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

Understanding the Earliest Signs of MS - Colorado

The University of Colorado is conducting a study that will try to improve our
understanding of the very earliest signs of MS by looking at individuals at high risk of developing MS, especially young adults with relatives already diagnosed with MS.

You may be eligible to participate if you:
» Are 18-30 years of age
» Do not have a parent, sibling or child with Multiple Sclerosis
» Have not been diagnosed with MS and have no symptoms of MS
The visit will take place on the University of Colorado Anschutz Medical
Campus.

Please contact:
Neurology Research Partners at the University of Colorado Anschutz Medical Campus by calling (303) 724-4644 or emailing NeurologyResearchPartners@cuanschutz.edu.

Participate in a study examining brain differences in MS - Pennsylvania

You are invited to participate in a study examining structural and functional brain differences in MS. The primary goal of this study is to examine how the brains of individuals with MS who do not have a  history of depression are different from comparison groups (i.e., MS+Depression). Researchers will explore how any differences we find contribute to more problems with depression in MS and see how such differences might lead to better treatment options for individuals in either group. 
 
The study involves two telephone screens and a clinical visit at Penn State, University Park, which involves clinical interviews, cognitive testing, questionnaires, an MRI scan, and a saliva swab. The in-person visit
takes about 6-7 hours. Participants will be compensated, and some funds are available to help with travel. 
 
To qualify for this study, you must meet the following criteria: 
 
Inclusion Criteria: 
- Over 18 years of age
- Diagnosis of MS from a neurologist
- Fluent in English
- Able to participate in cognitive testing
- Able to undergo an MRI
- Able to travel to State College, PA
 
Exclusion Criteria: 
- History of OR current depression
- Current psychotherapy/counseling treatment for depression
- Unwilling or unable to consent
- Diagnosis of bipolar disorder or schizophrenia 
- Substantial neurocognitive impairment (Dementia)
- Suicidal ideations
- Contraindications for MRI scan (e.g., metal in your body)
 
For information, please ontact Dr. Peter Arnett and his research team at the Imaging and Depression in MS Project at:814-865-5578 or depression.imaging.study@gmail.com

Registry: Family Caregivers of People with MS and other Ilnesses

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.

Falls and Fear of Falling in Adults who Require Wheelchairs for Locomotion

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.

Study of the Feasibility of an Individualized Measure of Disability for Children and Adolescents with Multiple Sclerosis

Researchers at McGill University are currently looking for children and adolescents diagnosed with MS and their parents to participate in a study about their MS. They want to know what is important to their quality of life and how children with MS and their families prioritize these concerns. They have developed a measure of disability for children and adolescents with MS and would like to assess the feasibility of this measure, the Pediatric MS Index (PMSI). The aim of this study is to assess the extent to which the PedsMSI can be used in clinical settings with children and adolescents with MS and parents of children with pediatric MS.

The inclusion criteria include children and adolescents with MS, aged between 8 years and 18 years old and fluent in either English or French. Parents of children with MS are eligible to participate. You will be required to answer the PedsMSI twice and complete an interview. Those who complete the interview with us will be compensated. They hope to recruit 30 children with MS and parents of children with MS.

If you are interested in participating in this study or need more information, please email Nikki Ow at xiao.ow@mail.mcgill.ca

Monitoring Mobility in Daily Lives of People with MS - OREGON

The Oregon Health & Science University’s Balance Disorders Laboratory is recruiting participants for a study looking to measure gait during daily activities using small, body-worn sensors.

This study requires:
• a single visit lasting about 3 hours in which gait and balance is tested
• wearing movement sensors at home for one week
• fall reporting for up to 12 months via bimonthly online surveys
• participant will be compensated

In order to qualify for this study individuals must be between the ages of 21 and 65 years old and have:
• a confirmed diagnosis of relapsing remitting or progressive MS
• mild-to-moderate MS-associated disability
• complaints about one's mobility

Contact Graham Harker at 503-418-2601 if you are interested in participating.

Work Health and Life Survey

The research associated with this survey seeks to improve workplace culture and understanding for those with chronic illness.The survey is completely anonymous and any information gathered will only be used for academic purposes.It takes approximately 7 minutes to complete.

Entrance criteria: participants must be 18 years or older, work at least 25 hours a week, and have been medically diagnosed with one or more chronic illness. Only surveys that have an authorized consent form (1st page of the survey) will be added to analyzed data.

Click here for the survey:
https://www.surveymonkey.com/r/WorkplaceWellness123

For more information, please contact: 
Contact Name: Christina Haugen Porter
Vanguard University of Southern California
Phone:760-905-1986
Email: chaugen.porter.research@gmail.com

Recently-diagnosed individuals and participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study needed for MS Survey

Researchers are recruiting people who were diagnosed with MS in the past 24 months and  participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study for a research study on their use of disease modifying therapies to update information collected in 2009 in the Slifka Study. The Slifka Study was started by the NMSS in 2000 and is named for a woman with MS whose family helped support the project.  Since then, the Slifka Study has interviewed over 4,600 individuals with MS, most of them many times. Researchers are again interviewing Slifka study participants, and are also asking new participants to join this research study.
 
The interview will be on the telephone and last about 35-45 minutes. Participation is, of course, voluntary and all information collected will be kept confidential.  Volunteers should feel comfortable completing a phone interview in English.
 
The Slifka Study has helped us understand the impact of MS on patients and their families, how to manage it more effectively, and how to advocate more successfully for better access to health care.
 
If you were diagnosed in the past 24 months or you are a Slifka Study participant and want to participate or learn more, please click this link for additional information and to register 

https://msresearch.gryphonscientific.com/
 

Health care experiences of people with walking difficulties and cancer

Researchers are interested in learning about the health care experiences of people who have difficulties with walking and who later in life develop certain types of cancer.

Researchers at the Health Policy Research Center at Massachusetts General Hospital are running this study, which is funded by the National Institutes of Health. Those who complete the interview will be compensated.

To volunteer, you must:

· Be between 21-74 years old

· Speak English and live in the United States

· Have had problems walking or no longer be able to walk for at least one year before your cancer diagnosis. Because of this walking problem, you must have had trouble getting around your home, taking a bath or shower, dressing, using the toilet, or feeding yourself

· Have had cancer – except for melanoma– within the last ten years

· Have no other cancer history

Your participation in the interview is voluntary. The interview will take up to two hours, but you can stop at any time and not answer any question you don’t want to answer. The team will audio-record the interview to review, but will delete the recording when the project is over. Nothing will happen to your health care services you receive if you decide not to take part. Your identity will be kept confidential and your name will not be connected to anything you say in the interview.

If you have questions or would like to participate, please contact Nicole Agaronnik at 617-724-0930 or email her at nagaronnik@mgh.harvard.edu. Please leave your name, e-mail address and/or phone number so that the team may contact you.

Psychological Factors and MS

Researchers and psychologists at the University of Melbourne are looking for participants aged 18yrs+ diagnosed with MS. Research is being conducted to identify transdiagnostic psychological factors that contribute to the development and maintenance of sexual dysfunction, depression, anxiety and eating symptoms in MS. These symptoms are prevalent among individuals with MS and have adverse consequences for wellbeing and disease management.
 
This research represents an important opportunity to increase clinical understanding of these common symptoms in MS and provide directions for future psychological interventions aimed at reducing symptoms.
 
What does my participation involve? 
  • Survey one (40-60minutes length). 
  • Survey two (30 minutes length) - participants will be invited via email in 6-months time to complete a second, shorter survey. Participation is voluntary. After completing survey two, participants will be entered into a prize drawing. 
To participate, please paste this URL into any web browser: https://melbourneuni.au1.qualtrics.com/jfe/form/SV_0JVw2sIw1cUYT3g
 
For more information, please visit the project website: https://psychologicalsciences.unimelb.edu.au/research/mood-and-anxiety-disorders-laboratory/involvement/trp

For further queries, please contact lead researcher Dr. Litza Kiropoulos litzak@unimelb.edu.au
 

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