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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

NOTE: The COVID-19 pandemic may affect the status of the studies listed on this website. Trial recruitment or visits may be postponed, and responses from study coordinators may be delayed. If you are enrolled in a study, your study coordinator will likely reach out to you with any changes. Learn what you need to know about COVID-19

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.

MS and 'Brain Fog': Survey and Phone Interview

Researchers at Kent State University at Salem Department of Psychological Sciences are very interested in how you experience “brain fog,” a subtle cognitive impairment that is sometimes also known as “fibro fog,” Functional Cognitive Disorder, or more simply, cognitive dysfunction. The purpose of this study is to understand your individual experience with "brain fog," how it impacts your social relationships, and how healthcare providers view "brain fog" as a symptom.
 
Participation and Procedure:
-In order to participate, you must be over the age of 18, live in the United States, speak English, and experience brain fog or have previously experienced brain fog.
-Participation is voluntary and participants can stop at any time.
-Participants take a short survey that includes questions asking for contact information and current diagnosis. After the survey, participants will schedule a phone interview with a researcher on a date and time that is convenient for them. The phone interview will last between 30 and 45 minutes, or shorter. Participants will be asked to describe their brain fog, how often they experience brain fog, how it impacts their relationships, and how their healthcare provider views brain fog.
 
For more information regarding this study, or to participate, please send an email to kentstatebrainfog@gmail.com.

Swallowing: Online Survey

Researchers from the University of Texas at Austin invite you to participate in an online survey study investigating swallowing questionnaires in people with Multiple Sclerosis.
 
Eligible participants will be invited to enter a drawing for compensation.
 
Eligible participants must:
  • Be at least 18 years old
  • Have a medical diagnosis of Multiple Sclerosis
  • Have no other neurological diagnoses
The survey will take approximately 10 minutes to complete.
 
A link to the survey is below:
https://utexas.qualtrics.com/jfe/form/SV_bvj1WyGnelQ6jSl
 
If you have any questions, please reach out at 512-495-5816 or swallowstudy@utexas.edu.
 

Matched and Mismatched Social Support in Women with MS

A counseling psychology doctoral student from Seton Hall University is interested in looking at how social support affects feelings in women who have MS. This study may help healthcare providers and loved ones to understand the needs of those with MS. It also may help improve the well-being of those with MS.
 
Participation & Procedure
Participation is voluntary and participants can stop at any time. The survey will take 15 – 20 minutes to complete.
This study includes the following questions:
1) background questions
2) the Inventory of Socially Supportive Behaviors will ask about the social support you have received and want
3) the SymptoMScreen will ask about MS symptoms
4) the Hospital Anxiety and Depression Scale will ask you about mental health symptoms
 
Anonymity and Confidentiality
Your name and no identifying information will be asked. You can open the survey through a secure link. The data will be stored in a secure location. 

Anticipated Risks
There are minimal risks to this survey. If distressed, please call a mental health professional at the National Crisis Hotline at 1-800-273-8255 or by using the American Psychological Association’s psychologist locator: https://locator.apa.org/?_ga=2.39652515.1684085803.1519678909-1000026211.1494004804

Survey:
By clicking on this link, consent is being provided to participate in this study.
https://shu.co1.qualtrics.com/jfe/form/SV_5o0NDRVusHMXXpz

Questions can be directed to Elena Thomopoulos at Elena.thomopoulos@student.shu.edu or her advisor, Dr. Pamela Foley, at 973-275-2742 or pamela.foley@shu.edu.  If you have questions about rights as part of the study, contact the Director of Seton Hall University’s Institutional Review Board, Dr. Michael LaFountaine, at (973) 313-6314.

People with MS and case managers

A Doctoral student from the University of Phoenix, Phoenix, AZ. is researching the collaboration and experiences of case managers and people with MS. The purpose of this case study is to discover and understand the collaborative efforts between case managers and individuals with a diagnosis of MS. The significance of this case study is intended to raise awareness of understanding individuals with MS, and how case managers advocate for change on a client’s behalf. 


Your participation is entirely voluntary. The study involves a telephonic interview involving approximately 45 – 60 minutes. This interview includes questions regarding interactions with a case manager, your perceptions of a description of a case manager, and the assistance they give you concerning your medical care. All data is collected anonymously. Prospective participants must meet the following inclusion criteria:

  • Definite diagnosis of Multiple Sclerosis (all subtypes)
  • Over 18 years of age 

If you wish to participate in this research study, please contact the study’s principal investigator via email usafrnped@email.phoenix.edu to set up an acceptable interview time.

Service Members or Veterans with MS

The University of Washington is conducting a study to evaluate health services delivery and supports for veterans with MS, spinal cord injury or other disabilities. Outcomes of this project will help us gain a better understanding for aspects of the health care delivery system that work well and features that need improvement. The project will further help military and Veterans Health Administration (VHA) care delivery teams improve their relationships with people with MS and caregivers.
 
You can participate if you are a:
  • Service Member or veterans diagnosed with MS after 9/11/2001, and their caregivers
Participation involves:
  • One 60-minute phone interview about your health care experiences before, during, and after treatment in a military or VHA facility
  • Interviews are scheduled at a time convenient for you\
  • Participants will be compensated
Contact the research office by email, scieval@uw.edu, or telephone: (206) 616-2947.
 
 
 

People with MS, Fundraising Events, and Physical Activity

Researchers at Appalachian State University are interested in understanding why people choose to participate and/or volunteer in charity fundraiser events that benefit MS (Bike MS/Walk MS, etc.), and how this participation impacts their overall views on physical activity and healthy lifestyles. Participants for this research need to be age 18 or older and have been a past, present, or future participant and/or volunteer in a charity fundraiser event to benefit MS. There are no other requirements. This research study is open to those living with MS as well as their friends and family. 
 
If you have any questions or would like additional information, please contact: Kimberly S. Fasczewski, PhD at fasczewskiks@appstate.edu 
 
The survey link can be found at: https://appstate.az1.qualtrics.com/jfe/form/SV_e3rk5kn7sHZqiHj 
 

The Psychosocial and Quality of life impact of multiple sclerosis in the first five years

Researchers at the University of Wisconsin-Madison are researching how people who have recently been diagnosed with MS (within the last five years) adjust to the impact of MS-related changes on health and quality of life over time, and how social and personal resources affect their adjustment. If you would like to participate in this research study, you will be asked to complete an initial and follow-up questionnaires. The initial survey will take approximately 30 minutes to complete. The first 500 participants will be compensated for their participation. Participants must be age 18 or above and have been diagnosed with MS within the past 5 years. The researcher leading this study, Malachy Bishop, Ph.D., CRC can be reached at (email: mlbishop4@wisc.edu). To participate in the study, please see the link:
https://tinyurl.com/MSadapt-UW
 
 

Evaluating a Newly Developed Video for Education of People Newly Diagnosed with MS

A doctoral student (Doctor of Nursing Practice) at Grand Valley State University, who is a person with MS, is seeking the evaluation of a video as a form of education for newly diagnosed with MS.  She is looking for people with MS who would be willing to view the video and answer two short surveys.  The video is approximately 15 minutes, the pre-video survey is 3 questions and the post-video survey is 8 questions.  She is looking for feedback on both the content of the video and the satisfaction of video as a form of education for people with MS.
 
To participate, you must:
  • Be 18 years of age
  • Be diagnosed with MS
  • Be able to read, write and understand English
If you have any questions and/or would like to take part, please email mccrumbt@gvsu.edu.

Online Survey: Postpartum Experience in Women with MS

A doctoral student at Villanova University is conducting an online survey to explore the emotional experience of women with MS in the postpartum period. The survey will ask brief questions about your postpartum experience including how you felt during that time. The information obtained will be used to enhance health care professionals’ understanding of the emotional needs of women with MS in the postpartum period.

To participate you must:
  • Be 18 years of age
  • Reside in the United States
  • Have had a baby after being diagnosed with MS within the past 1-10 years
You can access the survey here:
https://villanovanursing.iad1.qualtrics.com/jfe/form/SV_3QtGwBAdaeDSU8l

If you have any questions please contact Megan Walsh at mwalsh77@villanova.edu

Online Survey: Adults with Relapsing-Remitting Multiple Sclerosis

A researcher at Rocky Mountain University of Health Professions is recruiting adults with Relapsing-Remitting Multiple Sclerosis to participate in an electronic survey to learn what individuals with MS perceive as needed services to improve their quality of life.  This survey will take 10 – 15 minutes.  This brief survey will ask questions about how MS impacts your daily life.
 
Inclusion criteria:  Adults with Relapsing-Remitting Multiple Sclerosis
 
Here is the link to the survey:  https://rmuohp.qualtrics.com/jfe/form/SV_1CcIQIXWlpJXI8J
 
Thank you for helping to advance our knowledge of MS.  If you have any questions, please contact:
Erin Faraclas, PT, DPT  
Email:  erin.faraclas@rm.edu

Online Survey: Psychological Support

Researchers at University of Reading, United Kingdom, are conducting an online survey to find out the experience of psychological support in people with MS. The information obtained from this survey will be used to develop an intervention based on people’s experiences of psychological support since their diagnosis of MS, as well as their thoughts on what they would like in terms of content and how it is delivered. 
 
To take part in the survey, please click here: https://forms.gle/5YTssp4pDVFciYEe9

Online Survey: The impact of progressive neuromuscular disorders on intimacy

An occupational therapy doctorate student at the University of St. Augustine is examining the impact of progressive neuromuscular disorders on intimacy in individuals with these disorders and their partners. 

Inclusion criteria for this study include adults over 18 years of age with Parkinson’s disorder, Multiple Sclerosis, Huntington’s disease, and Amyotrophic Lateral Sclerosis and their partners. The survey should take approximately 25 minutes.

If you are interested in participating, the survey can be found at the following link:

https://www.surveymonkey.com/r/OTintimacy

If you have any questions, please contact: l.richards@usa.edu

Bladder Symptoms Study (Washington, DC Metro Only)

Researchers at National Rehabilitation Hospital located in Washington, DC are currently screening individuals on-the-phone only to participate in our new study to:
1. Estimate healthy urine of those with a neurological diagnosis causing neurogenic bladder and;
2. Estimate the effect of an intravesical probiotic (a healthy bacteria) on urinary symptoms and on the urine of those with a neurological diagnosis causing neurogenic bladder. 

To qualify for this study you must be:
  • 18 years or older
  • Use an indwelling catheter
  • Diagnosed with: Multiple Sclerosis, Spinal Cord Injury, Stroke, Spina Bifida, or other neurological diagnosis.  
  • History of 2 or more episodes of urinary symptoms or infection in the past year
Once in-person research continues, participating in the study requires: one in-person screening/training, weekly online questionnaires about symptoms until symptoms are experienced. When symptoms are experienced, you will instill 2 or 4 doses of the probiotic through your catheter to combat urinary symptoms. Lastly, provide urine samples when no urinary symptoms are experienced, before and after an instillation.  Once the intervention of instilling the probiotic occurs and symptoms are recorded, you will complete the study.

If interested, call Margot Giannetti McCloskey  at 202-877-1071 or e-mail Margot.Giannetti@medstar.net 

Comprehensive Model of Adherence in MS

Researchers at Kessler Foundation are seeking individuals with multiple sclerosis to participate in an online study that is investigating how individuals with MS make decisions regarding their medication(s) and treatment.
The findings may assist doctors in making informed decisions regarding treatment and care based not only on factors related to the disease, but also the individual.

This study is open to men and women with relapsing remitting MS who have been recommended a disease modifying treatment by their doctor and have either never started the treatment or discontinued treatment.

The study will last about 1½ to 2 hours during which participants will complete a comprehensive online survey, consisting of questionnaires that will ask about disease symptoms, medications and treatments, health-related behaviors and beliefs, personality, and memory.  Participants will be asked to give permission to the investigators to obtain information regarding their MS, such as disease course, duration, and level of disability from their MS doctor.
Participants will be compensated for their time.

To find out more and see if you are eligible, please contact Jacqueline Leddy (T: 973-324-8457, email: jleddy@kesslerfoundation.org).

The principal investigator of this study is Dr. Lauren Strober, Ph.D.

Healthy Aging Study – Now Through May (Flint & Detroit Telephone Interviews)

The University of Michigan’s Center for Disability Health & Wellness is conducting a study to learn more about the types of supports, environments, programs, and policies that have been helpful in supporting adults with limited mobility stay healthy and active in their community.
 
The researchers seek individuals who live in the Flint or Detroit areas and who:
  • are 18 years or older and can speak and read English;
  • use a wheelchair, scooter, or walker, both in the home and outside in the community;
  • have had their condition for more than 5 years; and
  • are willing to have the phone interview recorded and transcribed for research purposes. (Individuals will be de-identified. Your name and what you say will remain confidential.)
Participating in the study requires one 2-hour telephone interview for which you will be compensated.
 
If interested, call the research office (734) 615-6720 or email UM-Disability-Health@med.umich.edu and mention you are interested in the Healthy Aging Study. Be sure to include your name and phone number.

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.

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

Validating a Mobile App for MS Research

Researchers are seeking to validate a new smartphone app, impactMS, a personalized tool to help track MS at home. If you have been diagnosed with Multiple Sclerosis and live in the southern California area, the University of Southern California MS center invites you to participate in the impactMS study. The study involves the installation of the impactMS app, and 4 visits to the USC MS Center. After the initial visit you will be asked to come back to the USC MS Center at 3 months, 6 months, and 12 months for traditional clinical research assessments performed by health care professionals. You will be compensated per completed study office visit.

Individuals who are diagnosed with multiple sclerosis may be eligible to participate if they are 18 years or older and have access to a smartphone. Please be aware that you need to have your MRI disc in hand before joining. If you’re interested in participating in this study, please contact Santi Decunto at aimslab@usc.edu or call (323) 442-3013 to get started.

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.

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.

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

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

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/jfe/form/SV_cA3cJPIMiFBymfH

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!
 

REAL MS™: Personalized Medicine Research in MS, and More

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

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

Register for this study by joining iConquerMS
 

​Mobility impairments and fatigue - COLORADO

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

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

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.

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.

 

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

Investigators Seeking Tissue Samples Previously Obtained from People with MS and Similar Diseases

In order to discover the triggers of MS, National MS Society-funded investigators at the University of Utah are seeking to collect existing brain biopsy tissue from individuals nationwide who underwent a brain biopsy to diagnose an episode of “acute demyelinating disease,” including multiple sclerosis, acute disseminated encephalomyelitis, optic neuritis, or clinically isolated syndrome.  The researchers will arrange for the transfer of the tissue. No visits to the University of Utah are needed. Read more.

Researchers in California studying MS in Hispanic population

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

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

Vocational accomodations and MS

Investigators at the University at Buffalo are conducting an online longitudinal survey of individuals who have MS and are currently working. The goal of this research is to help patients identify possible vulnerabilities that may create employment problems. In this survey, participants will be asked about their work activities and problems they may have encountered. The entire survey will take less than 15 minutes to complete. Participants are being asked to complete the survey every few months so that any changes in
employment status can be confidentially identified. There is no direct compensation for this study.

For further information, please contact mscogsur@buffalo.edu.

Click here to go to the survey.

Rehabilitation of intention tremor in MS (Wisconsin)

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

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

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

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

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

Provide Feedback on Accessibility to Google

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

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

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

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

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

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

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.

Thinking Speed in MS - Requires Visit to New Jersey

Investigators at Montclair State University are evaluating a new measure of thinking speed in individuals with and without MS.

What does it require? A single visit to Montclair State University located in Montclair, NJ. You will complete pencil and paper tests and computerized tests of your reaction time and thinking ability. You will complete tests of your physical ability, like walking and placing pegs into a board. You will fill out questionnaires about how you feel. The visit will last approximately 2.5 to 3.5 hours. You must be 18 years of age or older to participate. You will be compensated for participation.

How to Participate. Email sandrylab@gmail.com or call (973) 655 – 2058 to find out if you are eligible. Please include your name & telephone number.

Registry: Family Caregivers of People with MS and other Ilnesses

Researchers from Kent State University College of Nursing are seeking family caregivers of loved ones with serious illness such as MS for a caregiver registry. Enrolling in the registry is voluntary and allows researchers to contact you if a research study becomes available. Prospective registry participants must meet the following criteria:
  • A caregiver for a loved one with a serious illness, such as MS
  • Be age 18 or over
This registry has received ethical approval from the Kent State University Institutional Review Board (IRB). You can withdraw from the registry at any time.  To learn more about and to add your name to the registry, visit the website at https://www.kent.edu/caregiver/family-caregiver-registry.

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

Multiple sclerosis - the individual's experience of invisible symptoms

A Cognitive Psychologist from Cranfield University is researching the impact of invisible symptoms on people with MS as part of a patient-led advocacy project on living with MS. The project is intended to raise awareness of the hidden symptoms of MS and capture some ways in which individuals attempt to explain their symptoms and experiences.

The study involves completing a short survey that will take approximately 15 minutes. All data is collected anonymously. Prospective participants must meet the following criteria:
  • Definite diagnosis of Multiple Sclerosis
  • Over 18 years of age 
Should you wish to take part, please find the link to the survey below:
https://cranfielduniversity.eu.qualtrics.com/jfe/form/SV_d6lGnDQw0bj5szP
Should you have any queries or concerns about taking part in the research please contact the researcher at v.smy@cranfield.ac.uk.

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

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

To participate you must be an adult who:
  • Is at least 18 years old
  • Has a neurological diagnosis (such as multiple sclerosis) for at least 6 months
  • Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
  • Has a computer with internet access.
  • Is able to read and understand English.
If you are interested in completing an anonymous on-line survey about your medical condition, falls, risk of falling, and fear of falling, please click on this link: https://www.psychdata.com/s.asp?SID=183112

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

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

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

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

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

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

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

Monitoring Mobility in Daily Lives of People with MS - OREGON

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

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

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

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

Physical Activity, Mindfulness, and Health

Researchers in the Department of Rehabilitation and Movement Science at the University of Vermont are interested in better understanding the attitudes and beliefs around physical activity, mindfulness, and other health-related behaviors in people with MS. This information can help inform practitioners in the design and implementation of more effective health promotion and activity programming.
 
The survey should take 30 to 40 minutes to complete. All information will remain anonymous and completion of the survey implies your consent to participate.
 
Please click the link below to access the survey. If you have any further questions, contact Dr. Susan Kasser at (802) 656-7742 or Susan.Kasser@med.uvm.edu
 
https://survey.uvm.edu/index.php/588412?lang=en

Participants Needed For Study On Job Crafting - New Hampshire

Researchers at the University of New Hampshire are looking for volunteers to take part in a study to develop and test a program to help people to re-envision and refine aspects of their job. You may be eligible to participate if you 
 
(1)    Reside in New Hampshire or Southern Maine;
(2)    Are 18-64 years of age;
(3)    Experience a physical or health condition that limits your work performance;
(4)    Are currently working or returning to work;
(5)    Have at least 1 year of work experience; and
(6)    NOT participating in an workers compensation program

Your participation would involve completing two interviews and weekly job crafting exercises and online surveys for six weeks. In appreciation for your time, you will be compensated.

For more information or to volunteer for the study, please contact:
Kristin King
Occupational Therapy Department
University of New Hampshire
at
(603) 862-1924
Email: kristin.king@unh.edu 

Survey for people who have MS and identify as LGBTQIA+

The research team in the UCSF MS Center (led by Dr. Riley Bove) is conducting a survey with people who have MS and identify as LGBTQIA+. The researchers are eager to include as many perspectives as possible to learn more about differences of care for LGBTQ+ persons with MS. They aim to learn specific healthcare concerns, possible differences in access to care, and positive examples or potential avenues for specialized support to improve long-term quality of care and life.
 
This study involves:
• A one-time 45min survey, which can be completed online or over the phone. Data is secured on encrypted devices and a private UCSF network. All responses are confidential and linked to a study ID rather than a name, birth date, medical record number, or other identifier.

In order to qualify for this study, individuals must:
• Be 18 years or older
• Have a confirmed diagnosis of MS or CIS
• Identify as LGBTQIA+
• Be willing to share your experiences relating to healthcare

Contact Gillian Rush at gillian.rush@ucsf.edu or (925) 330-9182 if you are interested in participating.

Character Strengths and MS

Researchers at the University of Wisconsin – Madison invite you to participate in a study about the impact of character strengths on the negative effects of MS. This study will help us better understand how strengths of character (such as bravery, kindness, and gratitude, among others) relate to the negative effects of MS (such as depression, pain, and fatigue).  If you decide to participate in this research study you will be asked to complete a series of brief questionnaires which will ask you to evaluate different aspects of your life.  Your participation will last approximately 30 minutes.  The first 450 participants will be compensated.  To participate in this study, please click the following link:

https://uwmadison.co1.qualtrics.com/jfe/form/SV_4T5X2AUv9jH7rX7

Cognitive Testing Study of Multiple Sclerosis - New Hampshire

Researchers at Dartmouth-Hitchcock Medical Center are currently enrolling participants in a study of cognitive testing for MS. This study compares computerized and in-person cognitive testing, to see how well results match.
 
What you would do as a participant in the study:
  • Complete assessments of your sensory, motor, and cognitive abilities both on paper and on the computer.
  • Provide demographic, medical, and other background data in questionnaires completed at home before testing and in person during your visit.
How long does it take?
  • Approximately 4 hours
Who is eligible?
  • People with relapsing-remitting or secondary progressive multiple sclerosis OR
  • People who do not have MS to serve as healthy control participants.
  • All participants must be between 25 and 59 years old.
Who is not eligible?
  • People who have another major neurological disorder.
  • People who have completed cognitive testing within the past year.     
  • Other exclusions may apply.
  • A telephone screen for interested participants will be offered to assess eligibility.           
Nominal financial compensation is provided.
 
For more information about this study please contact:
Emily Geiger
(603) 650-4536
emily.j.geiger@hitchcock.org

MS and Personality

Researchers at The University of Melbourne are seeking to investigate how individuals' coping styles and illness representations mediate the relationship between dispositional personality traits and adjustment to Multiple Sclerosis. Adjustment in the context of this research study, refers to both feelings of depression and anxiety and individuals illness acceptance. Researchers aim to develop a greater understanding of the experiences associated with Multiple Sclerosis, and identify appropriate targets for interventions to promote adaptive adjustment. 
 
Eligibility 
  • A diagnosis of Multiple Sclerosis
Participation
 
To participate, please email: davenportr@student.unimelb.edu.au
A researcher will respond to your enquiry with a survey link and password to access the survey. 

Work Health and Life Survey

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

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

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

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

Participate in a MS Website Testing Study (Must live in or near Bethesda, MD)

Pinpoint Patient Recruiting is helping to find participants for a market research study that is being conducted by Fulcrum Research Group, an independent healthcare research firm.
 
This purpose of this qualitative research study is to better understand how specific types of people with MS interact with information about MS.
 
Some of the study qualifications include:  
·      You have been diagnosed with secondary progressive or relapsing remitting MS
·      Are on your 1st or 2nd line of treatment (or have not started any treatment yet)
 
If you qualify and complete the study, you will be compensated.
 
·      If you qualify you will be asked to review a website related to a treatment for MS.
·      You will then be asked about your experience viewing the website.
·      The entire experience should last 1 hour.
 
To see if you qualify or ask any questions please contact Sarah at 980-458-2557 or email sarah@pinpointpatientrecruiting.com.
 
You can also click here to submit a form and someone will contact you within 24 hours: https://forms.gle/FwEAxBcakiyNgNdXA
 
 

Psychological Well-Being and Mental Health

A group of health care providers is interested in promoting the psychological well-being and mental health of every person with MS.  They would like to better understand how people with MS from different backgrounds think about and experience mental health. This study is part of the University of Massachusetts Medical School.

If you are over 18 and have MS, you are eligible to complete a research survey. 

Click here for the survey: 
https://arcsapps.umassmed.edu/redcap/surveys/?s=8EEEMN4P3F

This survey should take about 30 minutes to complete. Your participation is entirely voluntary. This survey includes questions regarding depression, anxiety, bipolar spectrum disorder, and alcohol, tobacco, and substance use disorder. By asking these questions, it is not intended to diagnose mental illness. If you have concerns regarding your own mental health, please notify your primary care physician or MS provider so they can refer you to the appropriate mental health specialist. Please feel free to contact the study principal investigator (Daniela.PimentelMaldonado@umassmemorial.org) and other study investigators to obtain further information regarding mental health in MS.
 

Pregnancy and MS Study: New England

Investigators at Brigham and Women’s Hospital in Boston are recruiting women with MS for the Pregnancy and Multiple Sclerosis Research Study (PREG-MS). If you live in the New England area, have MS and are now pregnant or plan to become pregnant soon, you may qualify for this PREG-MS study. Researchers want to understand the effects of MS on pregnancy and pediatric development, and the effects of pregnancy on the course of MS. If you participate they will collect health information from you via telephone interviews (every 3 months during and after pregnancy, for 3 years). They also will obtain medical records from your doctor's office. If you would like the opportunity to participate, please contact Dr. Maria Houtchens at 617-525-6576 or Jeta Pol-Patil at 617-732-5562, or email jpol-patil@bwh.harvard.edu for more information.

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

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

https://msresearch.gryphonscientific.com/
 

The impact of MS on language/communication skills and health-related quality of life

Researchers at the University of Sydney are conducting an international research study investigating the impact of MS on language and communication skills and health-related quality of life. This study requires participants to complete an anonymous online questionnaire. The questions cover a range of topics including MS subtype, language and communication skills, wellbeing, fatigue, quality of life, social and support networks, and thinking and memory skills. The questionnaires takes about 30-45 minutes to complete. The information gathered will help us better understand how often people with MS experience communication difficulties, what these communication difficulties may be, and how they impact on health-related quality of life and everyday activities.
 
Participants must meet the following criteria:
  • 18 years of age or above
  • Have a diagnosis of MS (any MS subtype)
If interested, to participate in this study, please click on the following link: https://redcap.sydney.edu.au/surveys/?s=PCR8ND4T9D. Your time and participation is very much appreciated.
 
If you have any questions, please contact the research team on e-mail at: selw5849@uni.sydney.edu.au. To access the Patient Information Statement, which describes the study in full, please click on the questionnaire weblink.

Perception in Multiple Sclerosis

We are conducting a research study being done by Dr. Ruth E. Propper a faculty member, at the Cerebral Lateralization Laboratory, at Montclair State University. We are interested in learning about perception in individuals who have been clinically diagnosed with Multiple Sclerosis. If you have not been clinically diagnosed, that is, diagnosed by a doctor, with multiple sclerosis, please do not participate. We are only recruiting people who are 18 years old or older; if you are younger than 18 years old, please do not participate.
 
If you choose to be in the study, you will complete a survey. This survey will help us learn more about perceptual experiences in multiple sclerosis. The survey will take about 10 minutes to complete. Some people who complete this survey may be invited to complete another survey. If you are invited to complete another survey, you will receive additional information.
 
If you are interested in learning more, or in participating in the survey, are 18 years old or older, and have been clinically diagnosed with Multiple Sclerosis, please click on the link below or paste it into your browser.
https://montclair.co1.qualtrics.com/jfe/form/SV_4HZVtgZDeiz6i7r
 

Health care experiences of people with walking difficulties and cancer

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

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

To volunteer, you must:

· Be between 21-74 years old

· Speak English and live in the United States

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

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

· Have no other cancer history

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

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

Health beliefs and physical activity in persons with MS

Researchers at the University of Alabama at Birmingham are conducting an online study asking about health beliefs and physical activity in persons with MS over the age of 18. Specifically, previous research reports significant relationships between social cognitive variables such as social support, self-regulation, motivation and physical activity in adults from the general population. This study is an investigation of various social cognitive factors that may be associated with levels of physical activity in persons with MS. The survey takes about 40 minutes to complete, and answers will be used to help inform future multi-level physical activity interventions for persons with MS.

If interested, to participate in this study, please click on the following link: https://uab.co1.qualtrics.com/jfe/form/SV_bwRZy1IatWRf1wF

If you have any questions, please contact the research team on e-mail at: enrl@uabmc.edu.

Emotional and Social Impact of Autoimmune Diseases

Scott Weitman, a high school student at Yorktown High School in Westchester County, NY, had lived with Alopecia Areata, an autoimmune disease that causes him to lose his hair. This has been difficult as it causes him to look different and has therefore made social life during school, more challenging.  Understanding what it is like for people to deal with an autoimmune disease has motivated him to design a project to help others. 
 
What will you do during this study?
  1. Participants will complete an anonymous, online survey through Google forms.  
  2. The survey includes answering questions based on the emotional, social, and coping aspects of autoimmune diseases. 
  3. Total time commitment is around 15 minutes.
Qualifications for the survey include:
  1. Having an autoimmune disease.
  2. All age groups are allowed to complete the survey.
 
If you have any questions and/or would like to receive the results of the survey in the upcoming months, please email scott.weitman@yorktown.org with the subject as “Please Send Survey Results.”  

Link to Survey:
https://forms.gle/feYH7ymFZucr5Eyr5
 

Developing an app for managing health and well-being

Researchers in the Health Promotion and Rehabilitation Lab at the University of Illinois are seeking assistance from people who have MS as well as other comorbidities. This research focuses on developing a science-based app empowered by your search knowledge that will help you communicate with health care providers, peers, family, and care-givers. Participants must be 18 years old or older and meet screening qualifications.
 
This study will be conducted in two phases. In the first phase, qualified participants will complete a few surveys and then meet for an online video conference (and if you have/would like to include a caregiver they are also welcome) for about 60-90 minutes. During this meeting you (and your caregiver) will be asked what features and information you would find helpful in the app. Both you and your caregiver will be compensated.
 
During the second phase, in April of 2020, once the app is developed based on your and your caregivers’ input, we will have another online video conference to discuss any additional feedback you have about the app. After completing the second phase, both you and your caregiver will also be compensated.
 
If you are interested, please fill out the online intake form at: https://go.illinois.edu/MSeHealth

For more information and to check if you qualify, please contact the Health Promotion & Rehabilitation Lab via any of the following ways:
email: MSeLibrary@illinois.edu
web: go.illinois.edu/MSeLibrary
call toll free:844-800-9972

Healthcare professionals needed for MS research exploring the perceptions around psychosocial interventions

Natalie Garnett, Trainee Health Psychologist at the University of the West of England is carrying out a doctorate study titled: A qualitative study exploring psychosocial professional’s perceptions of the acceptability and effectiveness of psychosocial interventions in Multiple Sclerosis care. The aim is to gain an understanding of how healthcare professionals think and feel about the psychosocial interventions they deliver for people with MS. This study has received ethical approval from the University of the West of England and involves participants completing an online survey consisting of 12 questions followed by some demographic questions, taking around 15/20 minutes to complete.

Participation in this study will be of great importance in helping towards gaining a better understanding of healthcare professional’s perceptions of psychosocial interventions for people with MS. This could help guide future training, education and the development of psychosocial interventions. As a thank you for completing the survey, participants will have the opportunity to be entered into a prize draw. 

For further information, healthcare professionals can contact Natalie Garnett at Natalie2.Garnett@live.uwe.ac.uk
 
To participate in this study, healthcare professionals can click the link below
https://uwe.eu.qualtrics.com/jfe/form/SV_1ReQXSdElBkbAs5

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