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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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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. 

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View summaries of some of the projects conducted with and by iConquerMS, including results if available.

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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.

Remote Study: Women with MS Applying for Social Security Benefits

Sandy Johnson, a Doctoral candidate at Walden University is recruiting participants for a research study on women's experiences in obtaining benefits from the Social Security Administration. Participants are women ages 25-61 with MS who have applied for benefits from Social Security due to cognitive changes. Participants will be selected randomly for a 60- to 90-minute phone interview. If you would like to participate in this research, please click on this pre-screening link: https://forms.office.com/r/E8r7fDWKY7 If you have any questions, please contact Sandy Johnson at 404-804-8626.
 

Online Survey: Caregivers and Relationship Styles

Researchers at the University of Wisconsin – Madison are seeking 150 – 200 participants for a research study exploring the relationships between caregiver burden and relationship styles. Spouses/Partners go through many changes together. For a diagnosis as complex and dynamic as Multiple Sclerosis, this impact can affect the person with Multiple Sclerosis and the person that takes on a caregiving role. This study is intended to explore the joint experience of adjustment to disability and the caregiving role for spouses/partners by considering the relationship style. Participants will respond to questions regarding their experiences with Multiple Sclerosis or as a caregiving spouse/partner and questions about their relationship styles at different points in their relationship. The survey takes roughly 35 – 45 minutes and first 40 couples who complete the survey will receive one $50 gift card per couple. To help ensure the researchers can best understand the joint experience, both spouses/partners must agree to participate in the study. Other eligibility requirements include: (a) must be 18 years or older, (b) comprehend written English at a 6th grade reading level, and (c) either have a Multiple Sclerosis diagnosis or be the spousal/partner caregiver of an individual with Multiple Sclerosis. Couples do not have to be legally married to participate.

Click here for the survey

Please email Megan J Baumunk, MS, CRC, CVE, LPC-IT at baumunk@wisc.edu with any questions.

Online Survey: Bone Health Management

Drs Lisa Grech and Ayse Zengin are researchers from Monash University who are exploring the current knowledge, practices and barriers to bone health management, osteoporosis and fracture risk in people with MS. Understanding the knowledge and experiences of bone health in people with MS will help identify the healthcare practices to support good bone health for people with MS, which will contribute to improved long-term health benefits for people with MS.
 
If you are a person with MS over 18-years of age, we invite you to participate in this research by accessing the link below. The survey will take about 20-30 minutes to complete and will ask questions about your MS, physical and nutritional activity, your bone health knowledge and any healthcare services or support you have had related to bone health management.
 
Participation is voluntary and the survey responses are anonymous.
 
Click here to complete the survey

If you have any questions about this research or your participation, please email lisa.grech@monash.edu or ayse.zengin@monash.edu.

Remote Study: Race, Ethnicity, and Active Lifestyle in MS

The Race, Ethnicity, and Active Lifestyle in MS (or REAL MS) Study is a remote, online study that aims to understand physical and cognitive function differences in MS across racial and ethnic groups. We're seeking adults with MS to participate in a 20–30-minute Zoom session and to complete online surveys asking about health history, symptoms, physical and mental health, and diet at home. Participants receive compensation for completing the assessment and surveys.

Click here to participate

Please email realms@uic.edu with any questions. 

Remote Study: Speech and MS

Aural Analytics is a medical device company that is developing a mobile application that records and assesses a person’s voice while performing a series of tasks and provides objective measures of speech in order to help with treatment, management, and hopefully in the future, early diagnosis of MS. 

Our research study is looking for people with MS or other motor speech disorders that would be willing to meet with a Speech Language Pathologist for a 30-60 minute teleconference. During this teleconference, the individual will complete a series of tasks while recording their speech on our mobile application.

Researchers are looking for participants who meet the following criteria:
  • 18 or older
  • U.S. resident
  • Speaks English as a first language.
  • Has access to 2 internet-connected devices, at least one being a mobile device (smartphone, tablet, etc). Patients will participate in the teleconference on one device and provide speech samples on the mobile device.
  • Has self-reported speech impairment due to dysarthria
If you would like to participate in our study or have further questions or concerns, please email research@auralanalytics.com.

Online Survey: MS and COVID-19

Researchers at Rocky Mountain University of Health Professions in Provo, Utah are conducting a study to determine the perceptions and experiences of people affected by MS who have also experienced Covid-19 infection. People who have MS often experience symptoms such as fatigue, muscle weakness, walking trouble and cognitive difficulties in their day-to-day life. Individuals typically take medications which can weaken their immune system and may increase their risk of contracting a viral infection, such as Covid-19. Researchers are interested in learning about how people with MS experienced Covid-19 infection, to provide insight for healthcare providers to improve treatment for similar patients in the future. 
 
Participants will be asked to complete a short online questionnaire, which will ask about demographics, each person's experience with Covid-19, and their medical history and experiences as they relate to MS. Participants who complete the online questionnaire will be compensated.

Participants will also have the option to sign up for a virtual interview with the researchers, in which they will be asked questions to gain further insight into their experience. Participants who complete the virtual interview will be compensated.

Fill out the survey here

Participants can email questions or concerns to jessica.raymond@rm.edu

Online Survey: Orofacial Health and Symptoms in MS

Researchers at the University of Michigan are interested in knowing about the different types of oral and facial (orofacial) conditions that are experienced by individuals with MS. They would like to use this information to help further assess relationships between orofacial health and symptoms and MS development and progression. Participation is voluntary and all data will remain confidential. 

Who:
  • 18+ years of age
  • Current diagnosis of Multiple Sclerosis
  • Living in the United States
What to expect:
You will fill out an online survey one time on oral and facial conditions. The survey will take approximately 45 minutes to fill out and can be done on a phone or computer.

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

Participants who complete the survey have the option to enter a drawing for compensation.

Fill out the survey here

If you have any questions, please contact the study team at 734-936-2844 or email Kratz_Lab@med.umich.edu.

Online Survey: Cognitive Outcomes in MS

Researchers as University College Dublin, Ireland, are conducting research to better understand cognitive outcomes in MS. Up to 60% of people with MS experience cognitive difficulties, which can include difficulties with thinking quickly or remembering information. MS can lead to changes in the brain. However, brain changes alone cannot fully explain why some people with MS experience more cognitive difficulty than others. Some people with MS seem to be better able to compensate for brain changes. This may be in part due to cognitive reserve. Cognitive reserve describes an individual’s ability to adapt to brain changes. A person with a greater cognitive reserve may be able to withstand the consequences of brain changes for longer. Cognitive reserve cannot be measured directly. Instead, researchers use proxy measures, including a person’s educational and occupational achievements, and their engagement in a wide range of leisure activities (e.g., socialising, volunteering, exercising, reading). 

In this study, we aim to investigate the impact of cognitive reserve on cognitive outcomes in MS. We are particularly interested in understanding how common MS symptoms interact with cognitive reserve. Many people with MS experience ‘invisible symptoms’, such as fatigue, depression, and anxiety. Experiencing any of these symptoms may impact an individual’s ability to engage in enriching activities. Invisible symptoms may be overlooked, both in clinical practice and in research. By participating in this research, you can help to address this.

If you decide to participate, you will complete an online survey, which will take about 25-30 min in total. The survey will include questions about your demographic background, your engagement in a range of leisure activities, and your experience of 'invisible MS symptoms', such as fatigue. At the end of the survey, you will complete a brief (below 5 min) online task. Please note that this survey should be completed on a laptop or PC with a keyboard. 

Fill out the survey here

If you have any questions about participating in this research, please email lead researcher Clara Stein at clara.stein@ucdconnect.ie.

Remote Study: Interviews with young people with MS about exercise

Researchers at Rocky Mountain University of Health Professions are currently recruiting young people with MS (ages 10-18) to participate in interviews about their experiences with exercise, and their perspectives of how MS has impacted their lives. The study will be completely online and will involve filling out an online survey (via Google survey) and participating in an interview (via zoom).
 
Purpose: The purpose of this study is to gain a greater understanding of the exercise barriers and quality of life limitations in children and adolescents with MS. Gaining a greater understanding of exercise barriers and quality of life limitations for these individuals will allow health care professionals to more effectively address the unique needs of children and adolescents with MS.
 
Time commitment: In total, the time commitment will only be about 45-60 min. The screening survey from the flyer should take less than 5 min, the demographic survey will take up to 10-15 min, and the interview will last up to 30-45 min.

Fill out this survey
 
If you have any questions, please email Emily Gard at emily.gard@rm.edu, or call 360-941-0766
 

Remote Study: Pandemic effects on access to care for hand spasticity

Researchers at the University of Minnesota, School of Nursing are interested in learning about the impact of Covid 19 on receiving healthcare services for people with hand spasticity. We want to learn how COVID-19 has affected their ability to receive healthcare either in-person or through telehealth. We want to understand their challenges and barriers since the COVID-19 pandemic. This is a two-part study, where participants are asked to complete surveys and participate in an interview. Each part can be completed remotely (e.g., via Zoom, online surveys, or over the phone) or in person (Twin Cities-MN residents only). Participants will receive compensation for both parts of your study

Eligibility:
  1. If you are 18 years and older and live in a community
  2. Experiencing moderate to high levels of hand spasticity on the dominant hand
  3. Difficulty performing at least one daily task with your dominant hand.
People who are interested in learning more about this research study can reach Dr. Rozina Bhimani (Principal Investigator) by phone (612-625-1497) or email at bhim0001@umn.edu

Remote Study: Speech Perception and MS

Dr. Lynda Feenaughty at the University of Memphis is conducting a study pertaining to the factors that lead to individual variation in speech perception and is currently recruiting individuals to participate in this study to better understand these factors. With the number of older adults with MS expected to increase in the coming years, understanding the mechanisms that support successful communication throughout the lifespan is crucial. The results from this initial work will allow us to better understand how talker health and listener health impact speech perception.
 
Eligibility
Adults (18-80 years of age) with a diagnosis of MS who speak English and have vision or hearing adequate for reading or listening. 
 
This is a three-part study, each part can be completed remotely (e.g., Zoom, On-line questions, listening to speech samples). In-person sessions are also available and will take place at the ANCD Laboratory in Memphis, TN. Each session will last about 60 minutes. Within these sessions, you will complete cognitive questionnaires and assessments (e.g., recall a list of words and sort cards into groups), as well as listen to speech samples over headphones and make responses using a computer keyboard.
 
If you are interested in participating in this study or have any questions, please email the study team at uofmancdlab@gmail.com or call Dr. Lynda Feenaughty at 901-678-3295. Participants who qualify for the study will receive compensation upon completion of all three sessions. 

Online Survey: First Year of MS

A new study at Massachusetts General Hospital (MGH) wants to learn about the experiences of people with MS and their loved ones in the first year of MS. This study will inform the development of a program to better meet the needs of MS dyads (people with MS and carepartners) early after diagnosis.

Participation consists of completing online surveys at 2 time points—within 6 months of MS diagnosis and again 6 months later. Surveys will take about 30 minutes to complete. Those who complete the surveys may have the opportunity to participate in a focus group with a clinical psychologist. In this focus group, you can share your experiences, such as the challenges and barriers you’ve experienced in your (or your partner’s) care, and any recommendations you have for a program for patients and their loved ones delivered soon after MS diagnosis. You will be compensated for participating in this hour-long focus group.

Fill out survey here

If you have questions, please email msdyad@mgb.org.

Online Survey: What do family members think of balance training for people with MS?

Researchers at the University of Vermont are exploring the attitudes, expectations, beliefs, and intentions family members have toward supporting people with MS in home-based balance training. Understanding what family members think about supporting home-based balance training for people with MS may help practitioners develop family-based interventions that improve balance, physical function, and long-term health benefits in this population.

If you are a person with MS, please share this information with a family member (e.g., spouse/partner, parent, child, extended family) who lives with you or close to your home.
 
If you are a family member of someone with MS, we invite you to participate in this research study by going to the link below.
 
Interested individuals will be asked to complete a survey that should take about 30 minutes to finish. Participation is entirely voluntary and the survey completely anonymous.

Fill out the survey here

If you have any questions concerning this research or your participation, please email Myeongjin Bae, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT at Myeongjin.bae@uvm.edu.

Online Survey: Education Preferences Regarding Sexual Health in Women with MS

Physicians at NYU Langone Health are conducting on online survey to understand how women with MS prefer to learn about sexual health.  The intention of this study is to use the information to create one or more educational program for patients about how MS can impact sexual health and management options. This 15-20 minute survey will ask participants questions about their current diagnosis, sexual health and education preferences. This survey is completely anonymous and participation is voluntary. Please follow the link below to participate if you meet the below inclusion criteria.   
 
Eligibility
  • 18 years or older
  • a diagnosis of MS
  • born female and identify as female
  • English speaking
 
Fill out the survey here
 
If you have questions regarding this research, please contact Meredith Wasserman, MD by email at Meredith.Wasserman@nyulangone.org

Online Survey: Hormonal Stages of Life and MS

Researchers at Colorado State University are conducting a survey study that aims to determine whether distinct hormonal stages of life (menstrual cycle, hormonal contraception, pregnancy, postpartum, post-menopause) influence disease symptomology, physical function, and the capacity to perform activities of daily living in women living with MS.
 
Participation involves filling out an online questionnaire that takes approximately 10-15 minutes to complete. This is an anonymous questionnaire in which no personally identifiable information will be collected.

Eligibility 
  • Female sex assigned at birth.
  • A diagnosis of MS. 
  • Aged 18 years or older. 
Fill out the survey here  

If you have any questions about the research, please email Kristin Johnson, Postdoctoral Research Fellow, at kristin.johnson@colostate.edu or Brett Fling, Associate Professor and Director of the Sensorimotor Neuroimaging Lab, at brett.fling@colostate.edu.

Remote Study: MS in Education

A team of Georgia Tech students are seeking individuals with MS and fine motor skill issues to participate in a remote Zoom interview. The primary goal of the study is to understand challenges faced by individuals with fine motor skill disabilities in the context of education in order to design better adaptive technology. Interviews will last 60 minutes, entirely remote, over Zoom video or audio calls, and you may withdraw from the interview at any time for any reason. Your presence and active participation would greatly enrich our abilities as design students to make more inclusive products that help us work toward a more equitable future.

If interested, please email zxu434@gatech.edu or evie.mitchell@gatech.edu

Online Survey: Anxiety in MS

Researchers at the University of Melbourne are interested in identifying psychological factors that contribute to the development and maintenance of anxiety in individuals with MS. They would like to use this information to help improve psychological treatments of anxiety in those with MS. Participation is voluntary and all data will remain confidential.  

Participation involves filling out an online questionnaire at three time points, taking about 30 minutes initially, followed by a shorter 15-minute survey, and another 30-minute questionnaire six months later. It's all done on a phone or computer. The online questionnaire includes questions of a personal nature about your mental health and physical health.

Participants will be entered into a raffle for a chance to win gift cards.  

Eligibility
  • A diagnosis of MS. 
  • Aged 18 years or older. 
Fill out the survey here

If you have any questions, please email the principal researcher Associate Professor Litza Kiropoulos at litzak@unimelb.edu.au or email research staff working on this project at Anxiety-Illness@unimelb.edu.au.

Remote Study: the effects of hip pain and hip/postural stability factors on balance control

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

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

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

Remote Study: Online Writing for Healing Workshop for Adults Living with Multiple Sclerosis

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

Online Survey: Communication Problems in MS

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

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

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

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

Remote Study: Journey with MS

Liberating Research, a healthcare market research company based in London, UK, is currently running a study on MS on behalf of a pharmaceutical company to learn more about the journey of people with MS.
 
Who?
  • People aged 18-55 with MS
What does it entail?
  • Participants would be asked to complete a 60 minute remote interview and a short 30 minute online task before it. They will be compensated for the interview and the short task upon completion.
 How to participate
  • Participants interested in participating, please follow this link:  https://www.liberatingresearch.com/projects/206 and sign up to the website.
  • Once you sign up, a team member will call you to ask you some eligibility questions (5-10 min). If your profile matches the study, you will then be scheduled for the interview and give you more information about the online task. Once you do the interview and complete the task, you will receive the incentive.
If you have any questions please contact Michela michela@liberatingresearch.com or Shima shima@liberatingresearch.com

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

Remote Study: Seeking Friends/Family of People with MS

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.

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 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, or email ndsgroup@mail.nih.gov

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: 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 

Remote Study: 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.

Remote Study: 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.

Remote Study: 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
 

Online Survey: 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

Remote Study: Registry of 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.
Remote Study: Interviews with young people with MS: Exercise experiences and the impact of MS symptoms on quality of life
 
Researchers at Rocky Mountain University of Health Professions are currently recruiting young people with MS (ages 10-18) to participate in interviews about their experiences with exercise, and their perspectives of how MS has impacted their lives. The study will be completely online and will involve filling out an online survey (via Google survey) and participating in an interview (via zoom).

Fill out the survey here  

If you have any questions, please email Emily Gard at emily.gard@rm.edu, or call 360-941-0766.

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