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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.

NARCOMS Patient Registry

This registry of people willing to participate in MS research was initiated by the Consortium of MS Centers to facilitate multicenter studies. As of May 2007, the number of participants surpassed 37,000. Information is available in Spanish. Read more about Narcoms here or visit the website by clicking below.

Visit NARCOMS

Visit NARCOMS

Join iConquerMS™ to Propel Research Forward

Your voice can be a part of MS research by participating in iConquerMS™. Data gathered will be used by researchers to find patterns that might not be visible otherwise, which have the potential to lead to identifying the causes of MS, determining who will best respond to various therapies, and find new improved treatments for the disease.

Visit iConquerMS™

Visit iConquerMS™

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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.

Participants with MS Needed for Speech Production Study – Tennessee

The Adult Neurogenic Communication Disorders (ANCD) Laboratory in the School of Communication Sciences and Disorders at the University of Memphis is seeking participants with Multiple Sclerosis to help us learn how different neurological conditions impact speech. This research will help optimize clinical therapies for improving speech.
 
What will you do in the study?
1) Participants will wear a head-mounted microphone and have their speech recorded to a computer.
2) Speech tasks may include describing a picture or how to perform a task, reading a short paragraph, saying short sentences, talking about a topic of interest to the participant and performing two tasks simultaneously (e.g., speech tasks while executing a motor or thinking task).
3) Cognitive tasks may include memory (e.g., recalling words and symbols) and thinking (e.g., sorting cards and describing how the cards are sorted).
4) Total time commitment of approximately 2 hours, scheduled at your convenience.
 
Why might you consider participating?
1) Hearing screening
2) Participants will be compensated
3) Complimentary parking at Speech and Hearing Clinic
4) Knowledge that you are helping in the development of speech therapies
 
Some of the study qualifications include:
1) Native speaker of American English
2) Vision or corrected vision adequate for reading
3) Pass hearing screening (minimal hearing loss; no hearing aids)
 
For information please call Lynda at 901-678-3295 or email: uofmancdlab@gmail.com

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.

Treatment options for walking difficulties in MS

People living with multiple sclerosis are invited to participate in this online survey. 

The purpose of this study is to identify how people living with MS determine whether they have benefited meaningfully from rehabilitation for walking impairments and to gain insight into how individuals with MS make decisions about their treatment options.

This is a research project being conducted by Prue Plummer, PhD, PT, a clinical researcher and Associate Professor at the University of North Carolina at Chapel Hill.

Completion of this survey should take approximately 15 minutes.

Your participation is completely voluntary.  You may decline to take part or exit the survey at any time.  You are also free to decline to answer any particular question, if you wish.

There are no foreseeable risks involved in participating in this study.  You will not directly benefit from participating in this study.

Your survey answers will be submitted via the Qualtrics Survey Tool at the University of North Carolina at Chapel Hill.  Only the researchers will have access to the responses and all data are stored in a password-protected electronic format.  No identifying information will be collected, including your name, email address, or IP address.  Therefore, your responses will be anonymous, unless you choose to disclose any potentially identifiable information in your open-responses to the researchers.

If you have any questions about the study, you may contact Prue Plummer via telephone at 919-843-8658 or via email at prue@med.unc.edu.

This study has been approved the IRB at the University of North Carolina at Chapel Hill (IRB #17-0055).  If you have questions or concerns about your rights as a research participant you may contact, anonymously if you wish, the Institutional Review Board at 919-966-3113 or by email to IRB_subjects@unc.edu

To participate, please use this link to go to the survey: Survey for people with MS

Studying Coping Style in MS and Other Autoimmune Diseases

A researcher from the Doctoral Program of Clinical Psychology at Midwestern University is looking for individuals with MS to fill out a brief online questionnaire.
 
Prospective participants must meet the following criteria:
  • Be over the age of 18
  • Have a diagnosis of MS (any type)
  • Be able to read and write in English
The research is investigating coping style as a mediator for depression, anxiety and quality of life, in active and inactive phases of autoimmune disease. This study aims to examine how coping style impacts disease activity in a person living with autoimmune disease. Information from this study will ultimately build on the understanding of the psychological issues affecting those with MS and other autoimmune diseases and may improve therapeutic interventions to treat and prevent symptoms and disease progression. The questionnaire should take approximately 15 minutes to complete. Participation is voluntary and completely anonymous.
 
The study has been approved by the Midwestern University Institutional Review Board. To take part you must be over 18 years old. Participation is greatly appreciated.

Please follow the link for the consent form and the survey:  https://www.surveymonkey.com/r/AUTOIMMUNE_COPING

For more information you can contact the researcher at halex84@midwestern.edu or at 630-272-1990.
 

Effects of Multiple Sclerosis on Balance - North Carolina

The Applied Biomechanics Lab at UNC Chapel Hill is looking for volunteers (both with and without multiple sclerosis) to take part in a research study on how multiple sclerosis affects balance in walking. The study involves walking on a treadmill in a virtual reality environment while your motion and muscle activity are recorded.

All experiments are completely non-invasive and have been approved by the University of North Carolina at Chapel Hill Institutional Review Board. To take part you must be 18-50 years old, and:
• Be free of orthopedic injuries/diseases other than multiple sclerosis
• Be able to walk comfortably without an assistive aid (e.g. walker, cane)
The study has 2 sessions: one at the Center for Rehabilitation Care lasting up to 1 hour, and one at Taylor Hall on UNC’s campus for up to 3 hours. You will compensated for your time and parking.

For more information, please contact:
Brian Selgrade and Jason Franz
NC State/UNC-Chapel Hill Joint Department of Biomedical Engineering
(919)391-4883 or unc.msbalancestudy@gmail.com

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:
http://bit.ly/AbilityInclusionXperience

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

MS Assistant Mobile Application – Atlanta, GA

The Center for Assistive Technology and Environmental Access (CATEA) at Georgia Tech is recruiting people with MS to evaluate a prototype of a new mobile app.  MS Assistant is a holistic mobile health and wellness self-management app. Participants will be asked to complete the background questionnaire, use the app, and rate the workload, design criteria, and satisfaction with the app, and usefulness and importance of its functional features. Participants will be compensated. The study can take place at participants’ home or Georgia Tech.
 
If you have been diagnosed with Multiple Sclerosis at least 5 years ago and are 18 years or older you are able to participate.  To join, email at ljilja@gatech.edu or call (404) 944-9969.
  • You must live in the Atlanta, GA, USA to participate in this study.
  • You must be 18 or over and have been diagnosed with MS at least 5 years ago by a healthcare professional to participate in this study.
For any questions or concerns please contact: (404) 944-9969 or ljilja@gatech.edu.

Self-perceptions in adjustment to MS

A Trainee Clinical Psychologist at the University of Sheffield (UK) is looking for people with MS to fill in two online surveys (6 weeks apart).
 
Prospective participants must meet the following criteria:
  • Be over the age of 18
  • Have a diagnosis of MS (any type)
  • Be able to read and write in English
The research is investigating the role of self-perceptions in adjustment to MS.  Some of the topics discussed include experiences of stress, the impact of MS on various areas of life, self-perceptions, and perceived ability to cope with the difficulties associated with MS. The questionnaires should take approximately 20 minutes to complete and participants will be invited to complete the second part six weeks following the first questionnaire.
 
The study has received ethical approval from the University of Sheffield Research Ethics Committee. Upon completion of the second part of the study, participants will be entered into a prize draw. Participation is greatly appreciated.
 
Survey: https://sheffieldpsychology.eu.qualtrics.com/jfe/form/SV_2mhOHHns0hHCY1n
 
For more information you can contact the researcher at sday3@sheffield.ac.uk.

myMS Smartphone Application

The USC Multiple Sclerosis Center is recruiting people with MS to validate a new smartphone app.  myMS is a personalized tool to help track MS at home. Participants will be asked to complete six-minute walking tests, cognitive function tests, visual acuity tests and quality of life questions as well as baseline and follow-up surveys through the myMS app. Participants will gain access to imaging visualization and genetics information free of charge through the myMS app.
 
If you have been diagnosed with Multiple Sclerosis, are able to walk with or without assistance, and are 18 years or older you are able to participate.  To join head to https://mspilot.usc.edu
  • You must live in the USA or Canada to participate in this study.
  • You must be 18 or over and have been diagnosed with MS by a healthcare professional to participate in this study.
  • Please have your MRI image DVDs available for upload before starting the registration process 
For any questions or concerns please contact: (323) 442-3013 or aimslab@usc.edu

Imaging the brain and assessing mobility in Multiple Sclerosis - Colorado

Researchers in the Sensorimotor Neuroimaging Laboratory from the Department of Health and Exercise Science at Colorado State University are recruiting participants for a study to measure how gait and balance are associated with the brain in people with MS. The study involves participation in:
  • Questionnaires
  • Neuroimaging approaches (MRI brain scan and non-invasive brain stimulation)
  • Gait (walking) testing
  • Balance testing 
Participants are required to be:
  • diagnosed with relapse-remitting MS -or- neurologically healthy
  • able to walk and stand without an assistive device
  • 18 - 85 years of age
Results from this study will enable researchers to demonstrate the changes in brain structure and physiology then relate that to gait characteristics in people diagnosed with MS. Participants will be compensated for completing participation in this study. If you are interested in participation, the next step is to find out if you meet the study inclusion criteria by contacting via email: sbr@colostate.edu or via telephone (970) 491-6160.

Seeking parents of Adolescents With Relapsing-Remitting MS

Researchers are conducting a small study of parents with 10- to 17-year-old children with relapsing-remitting MS to understand their medical journey and experiences.  Adolescents should have taken prescription medication to treat MS in the past to qualify.  Please contact Debbie Simon at 978-344-5141, cell/text 617-999-3037 or email dsimon@cambridgefocus.com to find out more and to see if you are eligible. The phone conversation takes 45-60 minutes and participants will be compensated for their time.

Parental Health and Youth Function: Online Surveys for Parents and Their Teens

Parents and their middle- and/or high-school aged children are invited to participate in a Queens College research study on Parental Health and Children’s Educational and Psychological Functioning. Parents and their middle- or high-school aged children will be asked to complete separate questionnaires online, and each will be compensated.
 
This study is led by Dr. Cliff Yung-Chi Chen, Assistant Professor, Educational and Community Programs, Queens College of the City University of New York.
 
Please email yungchi.chen@qc.cuny.edu for more information. Please include the number of middle- and/or high-school aged children in the email.

Microaggressions Experienced in the Workplace by People with MS

Researchers at Illinois Institute of Technology (IIT) are conducting a research study designed to learn about microaggressions experienced in the workplace by people living with multiple sclerosis (MS). Microaggressions are subtle, verbal or nonverbal, slights (that may be intentional or unintentional) towards individuals based on their membership to a specific group. The goal of this study is to gather information on these experiences, to better understand how they affect employment turnover, and to consider how personal strengths and values can help to cope with these experiences.

Participation in this study involves a 90-120 minute internet-based focus group via an online platform. To participate in the focus group, you must be (a) 18 years old or older, (b) living with MS, (c) have work experience in the past three years while living with MS, and (d) have the Internet access. Participants will be compensated. If you are interested in participating, please contact Eun-Jeong Lee, PhD at 312-567-5202 or by email at elee20@iit.edu.

Online Study on Primary Progressive MS

Solutions  Market Research is currently looking for people diagnosed with primary progressive MS to participate in an online study about their MS.
 
The study is conducted online.  Participants will be sent a link to complete the survey, which can only be completed on a Windows-based computer.  The study lasts approximately 1 hour and participants will be compensated.
 
Solutions follows all privacy regulations and is compliant with the HIPPA laws. 
 
If interested, please call Bridget at 815-744-7950 or email Bridget.Adell@ solutionsmarketresearch.com.  Please include a phone number if emailing.

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.
Click here to download the app from the Apple iTunes Store. 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.

Hand and Arm Function Study – Philadelphia Area

A researcher at University of the Sciences, PA, wants to learn the best ways to measure arm and hand function in people with neurological conditions. The researcher is seeking your opinion on improving the tasks and questions for a new measure being developed. You will be compensated for your time in this study.
 
Prospective participants should be:
-          21 years of age or older
-          Have difficulty using your hand (s) and/or arm(s) due to multiple sclerosis.
-          Conversant in English
-          Have no injury to the hand (s) and/or arm(s) within the past 6 months
 
There will some screening questions for you and if our study is a good fit for you, you will be asked to come for one session for about 3 hours to University of the Sciences in Philadelphia and try some tasks using your hand(s) and/or arm(s), and answer some questions. You will have to arrange your own travel to and from the location.
 
This study has been approved by University of the Sciences Institutional Review Board.

If you are interested please contact:
Namrata Grampurohit, PhD, OTR/L
University of the Sciences
600 South 43rd St, Philadelphia, PA 19104
206-353-6054
215-895-1170
E-mail: n.grampurohit@usciences.edu

Health Literacy and Emotional Functioning in People with MS

Researchers from the Augusta Multiple Sclerosis Center of the Medical College of Georgia at Augusta University, under the direction of Lara Stepleman, Ph.D., are interested in exploring the impact of health literacy on emotional functioning in people living with MS.  The research study survey can be accessed online at mshealthsurvey.com.
 
This survey is open to all those who have been diagnosed with MS, are 18 years of age or older, and are able to independently or with assistance complete survey items.
 
In addition to basic demographic questions, participants will be asked about MS-related health, beliefs about MS, knowledge of medical and self-management interventions for treating symptoms of MS, beliefs about the efficacy of various alternative treatments, preferred means for educating one’s self about MS, and emotional health.
 
The survey is anonymous (no identifying information will be collected) and takes about 25-45 minutes to complete, dependent upon the number of MS symptoms being experienced.  For your time, you will have an opportunity to be entered into a raffle drawing.  To maintain anonymity, the contact information collected for participation in the raffle will not be linked to survey responses.  The research study survey can be accessed at mshealthsurvey.com and completed via computer, iPad, tablet, or smart phone.
 
If you have questions about this survey, please contact Becca Floyd, Ph.D., Principal Investigator, at refloyd@augusta.edu.
 

Healthcare Needs and Satisfaction of People with MS

Researchers at the University of Illinois College of Medicine are conducting a survey to evaluate Multiple Sclerosis Patient Needs and Satisfaction. The questions focus on what you feel your healthcare team could improve upon/do differently to increase your satisfaction and see to all your needs. The results of this study will be released to hospitals nationwide in order to improve MS patient care. Please click on the link to complete the survey online:  https://uic.qualtrics.com/jfe/form/SV_aaQnpQ4ltcs2Owt
Estimated time to complete is 10-20 minutes. 

Male Caregivers of People with MS

A Clinical Neuropsychologist who is also studying at the University of Leicester is looking for male carers of people with multiple sclerosis (MS) to fill in a short collection of surveys online.
Prospective participants must meet the following three criteria:
  • Be a male
  • Be over the age of 18
  • Be caring for a loved one with a diagnosis of MS
The research is investigating characteristics of social support, carer burden, willingness to seek help and attributes related to gender. This research will help to highlight further the needs of male carers of people with MS and some of the barriers they may face in accessing support. It has received ethical approval from the University of Leicester Research Ethics Committee. All responses will be anonymous however participants can choose to provide an email address for a chance to win a prize. Participation is greatly appreciated.

Survey: https://www.surveymonkey.com/r/3VP5BKM

For more information you can contact the researcher at DAppleton@hssd.gov.gg

Perceptions of Women with MS about the Educational Needs related to Pregnancy, Labor and Delivery

Researchers at Villanova University are interested in learning about the educational needs of women with MS related to pregnancy, labor and delivery. They are specifically interested in learning about women’s experiences with childbirth education classes (attendance vs. non-attendance, what information was wanted and received or not received from the classes, women’s unanswered questions about labor and delivery). A phone interview will be conducted with women who are interested and compensation will be provided to women who participate in the interview.  To be eligible, women must:

- Be at least 18 years of age
- Have MS with some mobility limitation
- Be English speaking
- Have delivered a baby since being diagnosed with MS and within the last 10 years
 
If you are interested in participating, please contact Suzanne Smeltzer at 610-519-6828 or Suzanne.smeltzer@villanova.edu  

Healthy Volunteers Sought for iPad App Study: Cleveland, OH

The Mellen Center for MS at the Cleveland Clinic has been testing an iPad app that measures neurologic performance including vision, memory, and hand function. The purpose of this study is to validate these iPad tests against the paper and pencil industry standards. The Center is currently looking for healthy volunteers between the ages of 18-60. Compensation will be provided to study participants.
 
You will be asked to complete one visit that will last approximately 3 hours. During this visit, you will be asked to perform tests on both iPad and with paper and pencil. Subjects will be asked to perform each test twice. After the first series of tests are administered, a 30 minute rest period will be given to subjects. Demographic information will be collected as part of this study. You will also complete questionnaires regarding your quality of life and medical history. You will receive compensation for your time.
 
If you are interested in participating or would like more information,
please contact the study coordinator, Jaime Freiburger, BS, at 216-444-4494 or freibuj@ccf.org

Measuring everyday activities – New York and New Jersey

Researchers at New York University are testing a new and innovative assessment for measuring everyday activities for MS patients.
Prospective participants must meet the following criteria:
  • Definite diagnosis of Multiple Sclerosis
  • Between ages 18-65 years
  • No history of Traumatic brain injury, stroke, seizures or other neurological illness than MS
  • No history of drug or alcohol abuse
  • English as primary language 
Participation will include one evaluation session that will take approximately 3 hours and involves neuropsychological testing and self-report questionnaires.

Compensation for time and travel will be provided, and the study will be conducted at New York University in New York City or in Kessler Research Foundation in West Orange, New Jersey.

If you think you meet study criteria and would like to participate in the study, please call or email (email is preferred):
 
Yael Goverover, Ph.D. OT, Principal Investigator
(212) 998-5854
(646) 251-9497
email: yg243@nyu.edu

​Fatigue in Multiple Sclerosis - Oregon

Researcher at Oregon Health and Science University is investigating the role of brain mechanisms underlying fatigue and the effects of fatigue on balance control in people with Multiple Sclerosis.The study involves participation in:
 Fast six-minute walking task without walking aid or support
 Strength testing of foot muscles
 Nerve stimulation behind leg
 Balance testing
 Optional brain MRI scan

Participants are:
 18 to 65 years old,
 healthy or have MS
 not a regular exerciser (moderate to high intensity exercise > more than 3
times a week)

Participants will be compensated for completing a visit to Oregon Health and Science University, Portland, Oregon. If you are interested in participation, the next step is to find out if you meet the study inclusion criteria. Please click on the link here:

https://is.gd/FatigueinMS  

or paste it into your web browser to complete the screening questionnaire. You will receive an email or phone call if you qualify for the study.

Caregiving Across the Lifespan

Researchers at Towson University are investigating how individuals’ caregiver experiences and personality may affect their mental and physical health when caregiving for those with chronic illnesses such as MS. Your participation in the study may help researchers and therapists learn more about the influences on mental and physical health of caregivers, and this could improve their work with those who provide the care for family members with chronic illnesses such as MS.
 
Researchers are looking for participants who meet the following criteria:
  • Are currently at least 18 years old
  • Have provided care for a parent or adult relative with MS for at least one month, regardless of the age at which the caregiver role began
The study consists of an online survey that takes about 30 minutes to complete.  To participate, please follow this link:    https://towsonpsychology.az1.qualtrics.com/SE/?SID=SV_ebntHo4hdYSx0c5

The link will begin with an informed consent form, followed by the survey. 
If you have any questions or concerns before deciding to participate, you can contact Kim Shifren, Ph.D. at kshifren@towson.edu . This study was approved by the institutional review board at Towson University on 12/05/2016, protocol # 1612011461.

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!
 

Factors Contributing to Adjustment to MS

Researchers from the Counseling Psychology Doctoral program at the State University of New York at Buffalo seek to examine factors related to the adjustment of individuals living with MS.  The information from this study will increase the knowledge base of psychosocial issues impacting individuals with MS and may help improve psychological interventions aimed at benefitting this population.  Subjects for this study will be over 18+, have been diagnosed with MS, and can read English proficiently.  The online survey takes approximately 30 minutes.  Participation is voluntary and the information is anonymous. 
 
If you are interested in participating in the study, please click here for the consent form and the survey.
 
If you have any questions, please contact juliesza@buffalo.edu for more information.

Coping in Romantic Relationships When You Have MS

Researchers at Purdue University are investigating how an individual’s coping skills and distress associated with a partner diagnosed with multiple sclerosis affect romantic relationships. Your participation in the study may help couple and family therapists learn more about the influences on relationship satisfaction, to improve their work with individuals with chronic illnesses.
 
Researchers are looking for participants who meet the following criteria:
  • Are at least 18 years old
  • Are currently in a romantic relationship of at least 1 year duration
  • Have a partner diagnosed with multiple sclerosis
If you have any questions or concerns before deciding to participate, you can contact Anne Edwards, 219-989-8439 or abedward@pnw.edu. This study was approved by the institutional review board at Purdue University on 12/09/2016, protocol # 1611018454.
 
LINK TO THE QUESTIONNAIRE: https://purdue.qualtrics.com/SE/?SID=SV_9vLLuyftS8WvKgR

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
 

Diet in Male Veterans with MS - Colorado

This study is looking into whether dietary factors play a role in quality of life for male Veterans with MS. Participation in this study involves a 2-hour visit at the Denver, Golden or Colorado Springs Veterans Affairs facilities in which you will be filling out questionnaires. Compensation will be provided.

For more information about this study or to schedule an appointment, please call Daniel Hadidi at the University of Colorado at 303-399-8020 ext. 4714.

​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.

Usage of Assistive Technology Devices

Investigators at University of Illinois at Urbana-Champaign are conducting a study to investigate what factors and personal characteristics impact the usage or discontinuance of assistive technology devices. This is an anonymous survey so participants will not be asked for any identifying information. It should take about less than 15 minutes to complete the questionnaire. 

Results are expected to help improve the prediction of modern IT-based assistive technology device potential usage or discontinuance rate among people with disabilities.
 
Click here for the survey 

For any questions or concerns, please contact Dr. David Strauser via phone at 217-244-3936 or via email at strauser@illinois.edu.

Recruiting Women with Primary Progressive MS for Brain Imaging Study

Researchers at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire are seeking women with primary progressive MS to participate in a brain imaging study. The study involves an MRI of the brain (without contrast) and can be completed in one visit. Modest financial compensation is provided to help offset the time and costs of travel to Lebanon NH.

Recruiting:
I. Women with Primary Progressive MS, aged 25-55, right-handed, with no other major neurological or medical conditions
II. Healthy females to serve as control participants, aged 25-55, right-handed, with no other major neurological or medical conditions

If you are interested, please contact contact Emily Geiger by telephone (603) 650‐4536 or email emily.j.geiger@hitchcock.org.

Walking ability and fatigue in people with MS - NEW JERSEY

Fatigue is a common problem experienced by people with multiple sclerosis. Researchers at Rutgers University in Stratford, New Jersey are recruiting people to participate in a research study that will examine the relationship between walking ability and fatigue in people with multiple sclerosis. This study consists of one session that should last approximately two hours.
 
Investigators are looking for men and women who have been diagnosed with multiple sclerosis, who are between the ages of 18 and 65 years, who have some difficulty with walking, but are able to walk some distances without any kind of device (like a cane or brace).
 
If you are interested in finding out more, please contact Dr. Evan Cohen at by telephone at 856-566-7185, or by email at cohenet@shp.rutgers.edu.

Recruiting People with MS for Brain Imaging Research

Researchers from the Geisel School of Medicine at Dartmouth and Dartmouth‐Hitchcock Medical Center are conducting neuroimaging studies focused on understanding the biological bases of MS. Study procedures include questionnaires, brief cognitive tests and a functional and/or structural MRI exam (without contrast). Participation can be completed in one visit.

Recruiting:
I. Persons with an MS diagnosis, aged 18‐65 with no other major neurological or medical conditions
II. Healthy persons to serve as control participants, aged 18‐65 with no major neurological or medical conditions

Modest compensation is offered for time and travel to Lebanon, NH. If you are interested, please contact Emily Geiger by telephone (603) 650‐4536 or email emily.j.geiger@hitchcock.org

Social economic costs, quality of life, and experience in people with MS and their caregivers

This survey is part of an international project gathering evidence about the merits of moving away from the use of relapse as a measure of disease progression to the use of more accurate diagnostic follow up to monitor disease progression and the earlier use of disease modifying drugs to achieve better clinical results for patients. It will also assess the socio-economic impact of such a change. The project includes patients and clinicians from a range of international patient and professional associations based in Europe and North America.

Investigators are asking people with MS to complete the following questionnaire about their experiences which will take approximately 30 minutes to complete.

Click here for the survey

Another version of the questionnaire has been developed to capture the responses of the caregivers who are providing support and care for people with MS.

Click here for the caregivers' survey

Please note that the researchers will not know who has responded, and all the results will be collected and reported anonymously.  Responses will not be used for any purpose other than this research and once the responses have been fully analysed they will be deleted.

A detailed report on the study findings will be available from the researchers upon request, once it has been published.

For more information about the project you can contact the research team (Michela Tinelli, email m.tinelli@lse.ac.uk or telephone +44 20 7955 6628; Jean Mossman, email jean.mossman@btinternet.com).

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.

Study: Lifestyle Physical Activity

Professor Chung-Yi Chiu, PhD, of the Department of Kinesiology and Community Health at University of Illinois in Urbana-Champaign (UIUC) is conducting a study of lifestyle physical activity among people with MS. Participation consists of completing three survey packets over a period of 6 months. Participants will also be asked to wear a small movement measurement device on the waist for 7 days at three separate times (i.e., every 3 months).  Participation will be compensated.
 
Inclusion criteria: RRMS, 18-64 years old, able to walk without assistance, or able to walk with a cane.
 
Please note that there is no travel involved as all the materials will be delivered and returned through pre-paid postal service.
 
For further information and to check if you qualify, please contact the research group toll free at 844-800-9972 (local number is 217-300-2800) or by email to:  hapams2@gmail.com  

Emotional Processing and Relationships in MS - New Jersey

Researchers at Kessler Foundation are interested in learning how individuals with MS process emotions and how this affects relationships and quality of life. Participants will complete pencil and paper testing and answer questionnaires (a total of 5 hours which may be done in one or two visits). The participant’s significant other will also be asked to complete several questionnaires. Compensation will be provided. Healthy controls are also needed.
 
Eligibility:
  • Must be between 18-55
  • Must have no other neurological illness.
If interested, please contact Nancy Moore at 973-324-8450 or nbmoore@kesslerfoundation.org.

Walking and Talking - Multitasking with MS (New York City)

Doing two things at the same time can be challenging, especially for individuals with MS. How do our cognitive resources help us navigate complex or noisy environments?

To investigate this question, researchers at the Cognitive Neurophysiology Lab at the Albert Einstein College of Medicine in the Bronx are conducting a study measuring brain activity while participants walk on a treadmill. 
 
Eligibility Criteria:
• Must be 25-45 years old
• Must be diagnosed with Multiple Sclerosis
 
The study involves two parts: a neuropsychological evaluation (lasting about 1.5 hours) and an EEG study where you will be asked to walk on a treadmill and perform a simple cognitive task. EEG is a simple, non-invasive and painless method to look at brain activity (lasting about 3-4 hours). The lab is easily accessible by car or public transportation.

Participant will be compensated. If you are interested, please contact Dr. Pierfilippo De Sanctis by Telephone: (718) 862-1828 or (718) 862-1848; Email: psanctis@einstein.yu.edu  

Dietary and lifestyle factors and MS progression

Researchers at Bastyr University are collecting as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression. They are seeking the positive deviants. In this study, they are going to monitor participants’ health and disease status, and describe the dietary and lifestyle factors associated with the positive deviants. Among individuals with MS who are doing really well, what are they doing?

People with MS are invited to participate regardless of health status. The more people who participate, the more can be learned. To participate in this study, please read the consent form posted at www.CAMCareMS.bastyr.edu. Then fill out an online questionnaire every 6 months for the next five years.

Part 1: How are you doing? What are your habits? (15-30 min)
Part 2: What do you eat? (20 min)

Please direct any questions to Dr. Mischley at 425-602-3306 or neuroresearch@bastyr.edu.

 

Everyday behavior, thinking, and brain health in MS - Ohio

The Clinical Neuroscience Lab at The Ohio State University is conducting a study to examine the relationship between behavior, thinking abilities and brain health in relapsing-remitting multiple sclerosis. The study requires two visits to the OSU campus, tailored to your schedule. Participants are compensated for their time and parking. You may be eligible for this study if:

• Between the ages of 30-59
• Clinically definite diagnosis of relapsing-remitting multiple sclerosis (RRMS)
• Right-handed
• Have no other neurological or psychiatric diagnoses besides RRMS

If you are interested in participating, please contact the study coordinator at ra@clinicalneurosciencelab.com or 614-292-9568 for more information.
 

Multiple Sclerosis: Strategies for Graphic Design

The “Inclusion Framework” for Print Communications targeted at the Multiple Sclerosis Community.

The aim of this research is to prototype an “inclusion framework” that will advance knowledge for the design community about symptoms of Multiple Sclerosis and provide them options when working on MS-related communication pieces. “Inclusion” references attitudes and behaviors that accommodate people with disabilities without restriction while “framework” is a proposed thinking model that will focus on printed communications targeted at this community.

This proposed research will result in an exploration into graphic design in printed communications and in what ways design solutions can be tailored for people with Multiple Sclerosis. The survey will take no longer than an hour to complete and is conducted online anonymously. Participants will be asked several questions in relation to both graphic design, design thinking and their Multiple Sclerosis conditions. There are no exclusionary criteria based on age, gender, nationality, race, or ethnicity. The only criteria to participate is a confirmed diagnosis of Multiple Sclerosis. All results of the survey are anonymous to ensure complete confidentiality.

Click Here for the Survey

Quality of life in MS

Researchers from the Masters of Science in Occupational Therapy program at California State University, Dominguez Hills seek to examine factors that may determine quality of life (QoL) of a person living with MS. Information from this study will increase the knowledge base of the psychosocial issues affecting those with MS and may help improve occupational therapy interventions aimed to benefit the population. Subjects for this study will be 18 +, have been diagnosed with MS, and can read English proficiently.  The online survey takes approximately 20 minutes. Participation is voluntary and information is anonymous. 

If you are interested in participating in the study, please click here for the consent form and the survey.

If you have any questions please contact OTMSStudy@gmail.com or (818) 462-3640

Studying fatigue in MS and other diseases

DePaul University researchers invite persons with ME, CFS, MS, Lupus, and Cancer to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.

Eligibility Criteria:
Adults at least 18 years of age
• Must be able to read or speak English
• Have a diagnosis of Multiple Sclerosis, Lupus Erythematosus, or Cancer.

Click here to access the survey

Seeking controls without MS to help develop cognitive tests for MS – East Hanover, NJ

Researchers at Kessler Foundation are conducting a large, multi-site study to develop test norms for a commonly used measure to assess thinking speed, the Symbol Digit Modalities Test (SDMT). To be eligible, you must be between the ages of 18 to 74 and medically healthy. You also must not have any past or present diagnosis of a learning disability, alcohol or drug problems, or diagnosis of a significant mental health disorder (e.g., bipolar disorder, psychosis). Please contact Amy Lebkuecher at 973-324-8457, or alebkuecher@kesslerfoundation.org to find out more and to see if you are eligible. The study visit should take about one hour and you will be compensated for your time.

Job accommodation request survey

Individuals who are aged 55 or older and need job accommodations are being sought for a study by researchers at the Florida State University to share perceptions of factors related to accommodation requests by answering a few questions about yourself, your organization (if applicable), and your abilities and emotions in the process. This survey will take about 20-30 minutes. The results will help service providers and employers to learn more about how to improve the job accommodation process for older workers, considering the fast trend in aging workforce.

Click here to complete the survey.

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.

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.

Investigators seeking people with MS who are gainfully employed or are considering leaving the workplace or cutting back hours

Researchers at the Kessler Foundation are interested in learning more about the factors associated with employment decisions in MS. They are recruiting individuals with MS who are gainfully employed. In particular, they are looking for people who are considering leaving the workforce or feeling as if they need to cut back on hours. All participants will complete an online survey asking about their work status and various factors thought to be related to managing one’s MS and ability to work.  If interested, please contact Ally at abecker@kesslerfoundation.org or 973-324-8391 or Dustin at dmcdaniel@kesslerfoundation.org or 973-324-8444. 

Researchers recruiting 5,000 first-degree relatives of people with MS for genetic/environmental research study

Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age.

Read more about this study.

Researchers in California studying MS in Hispanic population

Investigators at the MS Comprehensive Care Center at the University of Southern California are examining the genetic clues linked to geographical origins that may be responsible for the clinical characteristics observed in Hispanics with MS. They are recruiting 300 individuals of Hispanic/Latino background. Participants will be asked about their ancestry and clinical characteristics via in-person questionnaire. A single blood sample for gene typing will also be obtained and sent for analysis. Participation is usually a single visit. This is an observational study. No drugs or interventions are used in this study.

For information, please contact contact the MS Center at (323) 442-6870 or 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.

PML registry and information for patients

Progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) has occurred among people who have used Tysabri® (natalizumab, Biogen Idec) after it became available for prescription in July 2006. (Read more here.) TheNational Institute of Neurological Disorders and Stroke of the National Institutes of Health has created a website that contains information on PML for patients and their families. It also has a section that is a disease registry, where health care providers (after they request a password) can securely enter anonomyzed data that can then be used by different researchers to further understanding of the disease.

Read more at https://pmlregistry.ninds.nih.gov.

Rehabilitation of intention tremor in MS (Wisconsin)

The Integrative Neural Systems Laboratory at Marquette University is seeking subjects to participate in a research study to examine avenues for rehabilitation of intention tremor in multiple sclerosis.

 Seeking healthy participants over 18 years old with normal or corrected-to-normal vision
 Seeking participants with MS over 18 years old and moderate to severe intention tremor
 Time Commitment: up to six 2-3 hour sessions over 3-4 weeks
 Compensation will be provided.

Participants will be tested on a series of tracking tasks using a robotic handle to examine how movement control changes under different visual conditions.

The outcome of this study will improve understanding of the factors that contribute to intention tremor in MS and may provide insight into therapies to reduce intention tremor.

For additional information, please contact Scott Beardsley, Ph.D. (Principal Investigator) at 414-288-4448 or Megan Heenan (study representative) at 414-288-1592.

Living with MS

JuneBrain, a small medical device startup company, is seeking individuals with MS to complete a brief 10-20 minute interview regarding their needs and typical daily routine as an MS patient.
 
These interviews will be conducted at a time most convenient for you either over the phone or in-person if you live in the Washington, DC area. Participation is voluntary and any information you provide will remain anonymous. Example interview questions include:
 
-- When were you diagnosed with MS? What led to your diagnosis?
-- How has your life changed since being diagnosed with MS?
-- How do you and your doctor monitor your disease?
 
The answers you provide will help gain a better understanding of unmet needs within the MS community, and help develop a product for people with MS.
 
If you have any questions or are interested in participating, please contact samantha.scott@junebrain.com

Employment Survey for People with Physical Disabilities

The Rehabilitation and Research Training Center (RRTC) at Virginia Commonwealth University (VCU) is conducting a study to determine if people with physical disabilities can gain information on employment by participating in a Facebook Group on Employment. The study will last for six months. However, individuals can spend as much or as little time as they choose interacting in the Facebook group or reviewing the materials disseminated through a monthly Email.   You may be employed or unemployed.  You must be at least 18 years of age and able to provide legal consent to participate.  You also must have a physical disability.
 
If you have a physical disability and would like to learn more about how you can participate, please follow the link for more information and to sign up! 
https://vcurrtc.org/studies/facebook/pd/request.cfm
 
You may also contact Dr. Katherine Inge directly at kinge@vcu.edu or (804) 828-5956 to learn more about the study.

Walking Difficulties in People with MS - New York, NY

Researchers at the Albert Einstein College of Medicine in New York, NY are looking for participants with and without walking difficulties diagnosed with MS to better understand the underlying brain processes associated with gait issues. Participation in the study would include walking on a treadmill at the participant’s desired speed while EEG brain activity is collected and some neuropsychological evaluations. Participants will be compensated for their time and travel. Participation could be completed in one visit, or two shorter visits. To qualify for the study, one must have a diagnosis of multiple sclerosis and be between 22 and 45 years of age.  

If you are interested, please contact Dr. Pierfilippo De Sanctis by telephone at 718-862-1828 or E-mail at pierfilippo.sanctis@einstein.yu.edu.

Fine Motor Skills and the Occupations of Young Adults with MS - New York

A researcher at Stony Brook University in Stony Brook, NY,  is investigating the correlation between fine motor skills and the occupations (self-care, work, and leisure skills) of young adults with MS. Your participation in this mixed method study will help to determine if fine motor skills are an influence in how your everyday occupations are performed. This study involves the investigation of the fine motor status of those with MS between the ages of 18-30 years. These findings will be further investigated in how they are linked to your occupations (self-care, work, leisure), through use of standardized assessments and a semi-structured interview.

Your participation in this study will further help future researchers and intervention therapists (OT/PT) in guiding toward the appropriate approach to treatment methods for improvement of fine motor skills and occupational performance.

If you are:

Ø  Between the ages of 18-30 years

Ø  Diagnosed with Multiple Sclerosis

Ø  In remission past one month

Ø  Curious about how your symptoms are effecting your functional skills

If you have:

Ø  30 minutes to volunteer your time and

Ø  30 minutes for a possible in person or telephone interview

Your participation will be totally at your convenience and where ever you feel the most comfortable. There are no significant risks associated with this study and you will be compensated for your time during the first portion of the testing. If you agree to be interviewed, extra compensation will be offered.

If you are interested in participating in this study, please contact Mary.squillace@stonybrook.edu or 347-228-8665.

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

Online Study of the impact of Pediatric MS on health and quality of life

Researchers at McGill University are currently looking for children and adolescents diagnosed with MS and their parents to participate in an online study about their MS. Children with MS and their parents will be asked to answer a web-based survey consisting of four short measures: the Patient Generated Index (PGI), an individualized measure; EQ-5D Youth version, a health utility index with 5 items; the KIDSCREEN-27, a 27-item quality of life measure; and the Faces Scale for mood, energy, and pain. The questionnaires will take no more than 15 minutes to complete. The survey is completely anonymous.
 
The inclusion criteria include diagnosis with MS before the age of 16, age between 8 years and 25 years old at time of survey, and fluent in either English or French.  Parents of children with MS are eligible to participate. If interested, to participate in the survey, please click on the following link: goo.gl/e2ekwU
 
For additional information, please contact Nikki Ow at xiao.ow@mail.mcgill.ca.
 

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:
Nicola Haakonsen, Research Recruitment Specialist at the
University of Colorado Anschutz Medical Campus by calling
(303) 724-4644 or e-mailing nicola.haakonsen@ucdenver.edu.

Participants with MS Needed for Eye/Ophthalmology Study in Tampa Florida

Tampa Bay Uveitis Center Research Clinic is seeking participants with MS to help us learn how the eyes can be used to monitor progression of MS. This research will help optimize clinical monitoring for progression of MS.

What will you do in the study?
  1. Participants will have a comprehensive eye examination
  2. Testing will include testing your peripheral vision, taking pictures of your eyes, doing a special picture of the optic nerve and the retina to check for any changes due to MS
  3. You will get and examination every 6 months to test for changes; a total of 5 exams over 2 years
  4. Total time commitment 2 hours, scheduled at your convenience
Some of the study qualifications include:
  1. Male or female
  2. Diagnosis of MS with a neurology exam in the last 3 months
  3. 18 years old or older
Participants will be compensated for travel.

For information please call Kim at 855-798-8393 or email: contact@tampabayuveitis.com

Understanding fatigue in Multiple Sclerosis

This research is being carried out as part of a PhD project at Glasgow Caledonian University (Scotland) by Scott Rooney (PhD Student), Professor Lorna Paul (Director of Studies), Dr Les Wood (PhD Supervisor), and Dr Fiona Moffat (PhD Supervisor). You are invited to take part in an online survey about fatigue in people with MS. Fatigue is reported to be one of the most common and debilitating symptoms of MS which may be described as exhaustion, a lack of energy, or overwhelming tiredness, which can occur at rest. The researchers aim to explore the number of people with MS who report fatigue and what other symptoms might be associated with fatigue. This knowledge will be used to develop and assess treatments designed to improve fatigue in people with MS.

Participants are adults (aged 18 or older) who have been diagnosed with MS by a doctor to take part in this study. Importantly, people with or without fatigue are eligible.

If you are interested in taking part, you are asked to complete an online survey containing seven questionnaires related to fatigue and various other symptoms and features of MS. It will take approximately 30-40 minutes to complete. The following questionnaires are included in the survey:
  • Fatigue Severity Scale
  • Modified Fatigue Impact Scale
  • EQ-5D
  • MS Impact Scale-29
  • Hospital Anxiety and Depression Scale
  • MS Neuropsychological Screening Questionnaire
  • Pittsburgh Sleep Quality Index
To complete the survey or to access further information please follow this link: https://redcap.gcu.ac.uk/surveys/?s=94KCXHHRPT . This survey was launched on World MS Day (May 30th) and will stay active for one month.
If you would like further information about this study, please contact Scott Rooney (scott.rooney@gcu.ac.uk).

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

Bladder Study Recruiting Participants with MS

MedStar Health Research Institute is seeking individuals with Multiple Sclerosis for a study that looks at the natural history of urinary symptoms, how those symptoms impact your daily life, and when symptoms most likely are related to a urinary tract infection.

Qualifications to participate in this study:
  • Diagnosed with MS for at least 1 year
  • Void for bladder management
  • Have had 3+ episodes of urinary symptoms since diagnosis
  • Use an assistive device
What to expect:
  • You will fill out a urinary symptoms survey every two weeks for one year. The survey is sent to your e-mail (see here for example - this is not the actual survey - https://www.surveymonkey.com/r/USQNBvoi)
  • You will do a dipstick analysis of your urine
  • You will receive compensation for your participation
If interested in this study call Dr. Amanda Rounds at (571)332-9887 or email: Amanda.K.Rounds@medstar.net

Web-based Cognitive Assessment for MS - Maryland

About one half of people with MS experience a change in their cognition. Cognition refers to mental activities including attention, concentration, multi-tasking, processing information, memory, and problem solving. Traditional paper-based tests are expensive, time consuming and require the expertise of a cognition specialist. Reliance on in-person assessment creates barriers for individuals who are limited in their physical mobility, access to transportation, and/or geographical proximity to a specialized medical provider. This study from Johns Hopkins Division of Rehabilitation Psychology and Neuropsychology will determine if a web-based cognitive assessment is effective for assessing cognition in individuals with MS.
 
Eligibility: Individuals with and without a diagnosis of MS who are at least 18 years old.
 
Participation Includes: One 2-hour in-person appointment, which will include a paper-based cognitive test and a web-based cognitive test.  Take the web-based test one additional time at home. Participants will be compensated.
 
If you are interested, please contact:
Johns Hopkins Division of Rehabilitation Psychology and Neuropsychology
Email: MSRehab@jhmi.edu
Phone: 410-502-9222

Caring for People with MS

Opinion Health is currently conducting a new study with family members or friends who care for and support people with multiple sclerosis in different countries in the world, including Canada.

The main objective is to reach out to all persons caring for people who live with MS (carers, family members, friends, neighbours, etc.) in a 15-minute survey on the effects of their care obligations. Participants will be compensated.

If you are interested in participating, please click here to complete the survey.
https://survey.opinionhealth.co.uk/uc/10071AN/?a=3&b=AS&c=MSC&d=

For more information, please send an email to: Joanna@OpinionHealth.com

A Survey about Treatments for MS

Researchers at Oregon Health & Science University are doing a survey to learn more about the wide range of treatments used by people with MS.
 
People who are over 18 years old and have MS are invited to participate in the Survey of Treatments Used by People with Multiple Sclerosis (Treat MS Survey), which is a survey that asks about the treatments you use to manage your MS and MS- related symptoms.
 
Responses will be anonymous. Researchers will not ask for any information which could connect your answers back to you, other than your zip code. If you agree to participate, you will be directed to complete an online survey. This study does not involve any visits to OHSU.
 
Participants who complete the survey can enter a drawing for compensation.  
If you are interested in learning more, please click the link below to read information describing the procedures, risks and benefits of participating in the study. If you agree to participate you will be directed to a survey collecting; the survey will take up to 30 minutes to complete.
 
If you have any questions or concerns, please contact the study staff at 503-494-3549 or TreatMS@ohsu.edu. You may also contact the Principal Investigator, Rebecca Spain, MD, MSPH at (503) 494-5759. Dr. Spain is an Assistant Professor in the OHSU Department of Neurology.
 
Please click the link below to begin the survey.
 
https://octri.ohsu.edu/redcap/surveys/?s=8EXA4R4TJW
 

Multiple Sclerosis Employment Study

Multiple Sclerosis Employment Study
 
Researchers at Purdue University are interested in the work experiences of people diagnosed with multiple sclerosis, particularly how working or not working affects well-being.
 
They are looking for participants who:
  • Are either employed or unemployed.
  • Have a confirmed diagnosis of multiple sclerosis.
  • Are age 18 and above.
  • Live in the United States.
  • Can commit to a 45-60 minute interview.
If you meet the criteria and are interested, please fill out the following 5 minute screener survey: https://purdue.ca1.qualtrics.com/jfe/form/SV_3En3SZqor3CQvtj.

The team will contact you if you are eligible to participate. Participation is voluntary, and the information you give will be de-identified and kept strictly confidential. Those who participate will be compensated for their time. If you have any questions, contact Blake Allan, PhD, Associate Professor of Counseling Psychology, Purdue University, ballan@purdue.edu.  

Community living with a physical disability

Researchers at Washington University School of Medicine are conducting a research study about the participation of people living with disabilities in the community. The goal of the study is to better understand the needs of people long-term disabilities to maintain independence and health as they age to improve services. Study participants will complete three surveys about their health and participation in activities at home and in the community over the course of two years. Participants will be compensated for each completed survey. Potential participants must meet the following criteria:
  • Age 45-65 years
  • Self-reported onset of a physical disability (e.g., MS, SCI, CP, stroke, amputation) at least 5 years prior to participation
  • English-speaking
You may take the survey online or over the phone:
If you would like to take the survey online: https://is.gd/agingwithdisabilitysurvey

If you have questions or would like to take the survey over the phone, please call Marian at 314-273-4118 or e-mail the research team at cedarmidwest@paraquad.org 

Coping Mechanism Survey

Researchers at the University of Illinois-Urbana Champaign are addressing how religion and spirituality affect coping behavior and health management behavior in people with MS.

Rationale: Due to the unpredictable nature of MS, many people with MS experience increases with their stress levels. In turn, the increased stress levels can worsen MS. Previously, researchers have found that religiosity and spirituality have helped people with other serious and/or chronic illness with increased stressed levels, physical and mental health, cardiovascular and neuroendocrine systems, and immune function.

Details: You do not have to be affiliated with any specific religion or be religious to qualify. No travel is involved! Once an individual has been enrolled (through online intake or through a telephone screening), a researcher with either e-mail a link to the online survey or mail a paper copy of the survey with a self-addressed, pre-stamped return envelope. The survey should take approximately 45 minutes to complete. Individuals will be compensated for their time and effort with the survey. There is no cost to the study participants.

To be qualified: Eligible participants must be 1) Clinically diagnosed with any type of MS within the previous 5 years, 2) 18 years or older, and 3) Not bedridden.

Please note: This study cannot enroll international participants at this time.

Contact: To participate, or request additional information, please complete our brief intake form.
OR you may contact us directly:
Email: copewithms@illinois.edu
Toll Free Telephone: (844) 800-9972

Balance Study - Indiana

Researchers at Trine University and the University of Indianapolis are seeking individuals with multiple sclerosis to participate in a study investigating the relationship between standing balance and self-efficacy (an individual's belief in their ability to successfully achieve a desired level of performance).  The study consists of answering three questionnaires and performing a standing balance test.  The study is conducted in one day for a time period of 1 ½ hours.

Participants for this study must:

  • be 18 years old,
  • have a confirmed diagnosis of MS
  • absent from a relapse 6 weeks before testing
  • be able to read and understand 2 – 3 step verbal instructions
  • have the ability to walk three meters (or 10 feet) with or without an assistive device, unaided by another person.

If you are interested in participating in this study, please contact Althea Watson at Trine University in Fort Wayne Indiana at 260-702-3588, or by email at watsona@trine.edu.  Testing will be conducted at Trine University in Fort Wayne IN, and at the University of Indianapolis in Indianapolis IN.

Environment and physical activity

Researchers at the University of Alabama at Birmingham are interested in how the environment you live in shapes your physical activity. The survey focuses on your current physical activity behaviors, neighborhood environment, thoughts, and health behaviors. The results of this study will help in creating future programs to promote physical activity in persons with MS. Please click on the link to complete the survey online, you will receive compensation for your time (20-40 minutes).

https://uab.co1.qualtrics.com/jfe/form/SV_elIBggTa2GRhYrP

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