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Surveys and Other Research Studies

Researchers Need You!

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

NARCOMS Patient Registry

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

Visit NARCOMS

Visit NARCOMS

Join iConquerMS™ to Propel Research Forward

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

Visit iConquerMS™

Visit iConquerMS™

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In this article

Overview

The National MS Society is committed to delivering accurate and reliable information to everyone affected by MS, and subsequently reviews many requests for participation in MS surveys. Following is a list of surveys (mostly online) and other research studies seeking to recruit people with multiple sclerosis that has been reviewed by the Society and offered as information only, not an endorsement or recommendation. The surveys/studies are being conducted either by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies conducting market research efforts to develop or improve products for people with MS. Further details about each survey/study, as well as contact information, are included below.

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

​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.

Health Literacy and Emotional Functioning in People with MS

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

Hand and Arm Function Study – Philadelphia Area

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

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

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

Physical Symptoms And Psychological Stress in MS

Researchers at Widener University in Chester, Pennsylvania are recruiting people to participate in a research study that will examine MS symptoms and level of impairment in participants who were diagnosed with MS as adolescents or adults. This research study has been approved by Widener University’s Institutional Review Board. The study will also examine depression, anxiety, and coping skills. This study is completely voluntary. Participants will be asked to complete a survey which will last approximately 20-30 minutes. Participants will have the option to continue their involvement by completing the survey once a year for 5 years.
 
Investigators are looking for men and women who were diagnosed with multiple sclerosis either as an adult or an adolescent, who are currently age 18 years or older. If you have any questions, you can contact the researchers via email: Nicholas Moore (nmmoore@widener.edu), Dr. Bret Boyer (baboyer@widener.edu).
 
Click here to complete the survey: https://widener.qualtrics.com/jfe/form/SV_3OudWchVMFUXvNP

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

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

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

Healthy Volunteers Sought for iPad App Study: Cleveland, OH

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

Measuring everyday activities – New York and New Jersey

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

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

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

Climate and MS Symptoms

tudent of the University of Stirling, UK looks for any volunteers available to participate in a short survey about life with MS in different countries.Through a short survey that was sent to mutiple countries that present different climates, the student will compare the results to see how climate affects the frequency and severity of symptoms in people with MS. Thank you.
 
Survey:  https://www.surveymonkey.co.uk/r/W6LWL76
 
If you need help or more information please contact rus00025@students.stir.ac.uk. ~
 

​Fatigue in Multiple Sclerosis - Oregon

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

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

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

https://is.gd/FatigueinMS  

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

Caregiving Across the Lifespan

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

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

College Students and Multiple Sclerosis: Navigating the College Experience

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

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

Factors Contributing to Adjustment to MS

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

Coping in Romantic Relationships When You Have MS

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

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

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

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

Register for this study by joining iConquerMS
 

Diet in Male Veterans with MS - Colorado

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

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

​Mobility impairments and fatigue - COLORADO

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

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

Usage of Assistive Technology Devices

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

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

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

Recruiting Women with Primary Progressive MS for Brain Imaging Study

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

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

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

Walking ability and fatigue in people with MS - NEW JERSEY

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

Recruiting People with MS for Brain Imaging Research

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

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

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

Working and Personal Meaning

Researchers at The University of Memphis are conducting a study investigating the relationship between work volition, activist orientation, job search self-efficacy, and personal meaning for individuals with multiple sclerosis. You are invited to participate in this study if you are at least 18 years old and have a diagnosis of multiple sclerosis. The survey can be completed in about 20 minutes.

Click here for the survey 

If you have any questions, please email Dr. Melissa Fickling at the University of Memphis at mfckling@memphis.edu
 

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

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

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

Click here for the survey

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

Click here for the caregivers' survey

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

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

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

Research Study for People with MS - Kent, OH

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

Effects of Feedback Presentation on Fatigue and Learning - New Jersey

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

Study: Lifestyle Physical Activity

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

Share experiences with pharma patient support programs

Optio Biopharma Solutions, LLC is seeking people with MS to provide feedback on Multiple Sclerosis pharmaceutical patient support programs (PSPs). A primary focus is understanding current program quality and types of patient service offerings.  A secondary objective is feedback on how PSPs might be improved to better serve patients and improve overall health outcomes.
  
A 25-30 minute interview will be conducted via telephone.
 
Inclusion criteria: Individual with MS currently on pharmaceutical therapy or with recent (within one year) experience with a pharmaceutical patient support program. Feedback is anonymous. No personal information will be shared.
 
For further information, please contact the research group at 949-793-3733 or by email to: yalda@optiollc.com

Emotional Processing and Relationships in MS - New Jersey

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

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

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

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

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

Dietary and lifestyle factors and MS progression

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

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

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

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

 

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

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

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

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

Multiple Sclerosis: Strategies for Graphic Design

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

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

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

Click Here for the Survey

Quality of life in MS

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

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

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

Participating in clinical research

The University of Rochester Medical Center is currently recruiting patients and caretakers of patients who have a rare disease diagnosis to participate in a research study that involves a one-time survey.  This will help us understand your thoughts about and experiences with participating in clinical research.

The purpose of this study is to learn more about how people impacted by rare diseases make decisions about participating in clinical research. This study also will ask questions about your experiences and comfort with technology (computers, smartphones, etc.). This study will help researchers in planning future clinical research studies for people with rare diseases, including clinical trials.

To learn more about this study or complete the survey if you choose to participate, click on the following link: https://redcap.urmc.rochester.edu/redcap/surveys/  and enter the code: DDPR3RYJ4.

If you have questions about the study, please contact Travis Amengual (Investigator) or Dr. Erika Augustine (Principal Investigator) at (585)-273-3810 or by email at batten@urmc.rochester.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

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

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

Job accommodation request survey

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

Click here to complete the survey.

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

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

Understanding PML (Bethesda, MD)

Doctors at the National Institutes of Health (NIH) are conducting a research study to better understand the disease course and pathogenesis of progressive multifocal leukoencephalopathy (PML). PML is a devastating, demyelinating disease affecting the brain of patients with a compromised immune system. This can be due to medications that change the immune system (like natalizumab, Tysabri) or due to other conditions like HIV infection. No treatment is currently available for PML. They are recruiting patients with PML to help learn more about the disease course and pathophysiology to help diagnose PML earlier and to identify potential therapeutic targets. Participants will be seen several times at the NIH in Bethesda, Maryland. Travel expenses will be paid and participants will be compensated for taking part in the research study. Evaluations will involve clinical exam, magnet resonance imaging with contrast, blood tests, and analysis of cerebrospinal fluid.

For more information, email: gloria.vongeldern@nih.gov.

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

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

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

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

Read more about this study.

Researchers in California studying MS in Hispanic population

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

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

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 

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.

Impact of social support on the quality of life of spousal caregivers of people with MS

Researchers at the University of Buffalo, SUNY  are investigating the quality of life of spousal caregivers of people with Multiple Sclerosis. If you are a caregiver who has a spouse with Multiple Sclerosis, you are invited to participate in this research study in understanding the factors that contribute to the quality of life of caregivers who have a family member with Multiple Sclerosis. The aim of this study is to reinforce a need for more programs dedicated to caregivers of people with MS as well as lend itself to the creation of more support-based resources for them. The survey takes approximately 45 minutes to complete.

Click here to fill out the survey.

For further information, please contact Camille Simonetti at camilles@buffalo.edu.

PML registry and information for patients

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

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

Rehabilitation of intention tremor in MS (Wisconsin)

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

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

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

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

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

Living with MS

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

Employment Survey for People with Physical Disabilities

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

The Impact of Walker Style on Gait Characteristics in Adults with MS - Minneapolis, MN

Despite the common use of walkers, we know very little about how they actually impact a person’s walking. The purpose of this study is to compare the impact of 3 different types of walkers on walking. Researchers in Minneapolis, Minnesota are seeking adults with MS who live in the community and do not use an assistive device for walking. This 90-minute study will involve walking without an assistive device and then walking with 3 different types of walkers after a brief training session. An electronic device, the BTS G-Walk, will be worn around the waist to gather the desired data.

Recruiting

-At least 18 years of age

-Diagnosis of MS

-English speaking

-No assistive device use in the past 6 months

-Currently able to independently ambulate without an assistive device 1 block on level surface

If you are interested in participating, please contact Prof. Deborah A. Madanayake at 651-690-7787 by Friday, July 7th.

Walking Difficulties in People with MS - New York, NY

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

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

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

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

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

If you are:

Ø  Between the ages of 18-30 years

Ø  Diagnosed with Multiple Sclerosis

Ø  In remission past one month

Ø  Curious about how your symptoms are effecting your functional skills

If you have:

Ø  30 minutes to volunteer your time and

Ø  30 minutes for a possible in person or telephone interview

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

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

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.

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

Locus Of Control And Quality Of Life Among Individuals With MS

A researcher, and fellow MS patient, at The University of Texas Rio Grande Valley, TX is looking to identify factors associated with higher reported levels of perceived quality of life among individuals with MS.  The researcher is seeking your participation in exchange for the opportunity to win a prize. Participants are to complete an online survey (this should take about 30-45 minutes) and provide an email address.  The researcher is seeking a minimum of 200 participants for this study.
 
Prospective participants should be:
  • 18 years or older
  • Have a diagnosis of MS
  • Be a US resident or legal permanent resident
This study has been approved by the University of Texas Rio Grande Valley Institutional Review Board.
 
Survey:  https://utrgv.co1.qualtrics.com/jfe/form/SV_cGRZAaTAuMcQFdr
 
For more information please contact the researcher at:  danielle.fox01@utrgv.edu

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