Surveys and Other Research Studies - National Multiple Sclerosis Society

Skip to navigation Skip to content

Surveys and Other Research Studies

Share

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.

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
 

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.

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).

Online Survey Seeking People with Primary Progressive MS

A market research firm, Shapiro+Raj, is conducting an online survey of people with primary progressive MS, covering treatments, diagnostic process, and general viewpoints and attitudes. The survey takes 35 minutes to complete and compensation will be provided.

If you are interested in participating, please click on the pre-questionnaire link below. If you qualify for the study, Shapiro+Raj will send you the survey link to be completed between May 20 and June 6.

Click here for the pre-questionnaire

Understanding Depression and Anxiety in People Living with MS

The University of Liverpool is conducting research to help understand more about emotional distress in MS. They are interested in how people make sense of their illness and the nature of depression and anxiety in MS. They are inviting people with a diagnosis of MS to complete a set of questionnaires that ask for views about MS and their beliefs about depression and anxiety. It is possible that some people will have experienced depression and anxiety during the course of their illness, whereas others may never have experienced these difficulties. It is important to get a sense of different perspectives to build a more complete understanding of the psychological aspects of depression and anxiety in people living with MS.

Participants will be asked to complete online questionnaires that take approximately 30 minutes, and agree to leave a contact email in order to complete the same questionnaires about 12 weeks later.

There is minimal risk that participants will find the subject matter distressing. Participants will be advised to refrain from participating if they find the subject matter sensitive. They have the right to withdraw at any time.

Click here for the survey

For more information, contact Phillip Heffer-Rahn, 
Email: prahn@liverpool.ac.uk, ​Tel: +44 0151-794-4160

 

Survey on smartphone applications/software for people taking Rebif®

bioStrategies Group, a consulting firm specializing in helping clients develop and commercialize innovative technologies to better serve patients, is currently looking to hear from anyone currently taking Rebif® for their MS treatment. Anyone who is currently taking Rebif will qualify for this short online, 10 minute study. All responses are confidential and no identifying information will be shared. The study explores use and perception of smartphone applications/software designed for prescription medications. 
 
Click here to access the study

For more information:
Julie M. Benson
Director of Recruiting
bioStrategies Group
benson@biostrategies.com

Exploring the experiences of lesbian, gay, bisexual and trans persons living with MS

Researchers from De Montfort University in Leicester, UK, are looking for participants for a study investigating the experiences of lesbian, gay, bisexual, trans and queer (LGBTQ) individuals living with MS. This study aims to examine the effects of MS on LGBTQ individuals, and how are those effects are presented and explained by the individuals themselves, in order to inform healthcare professionals, advance knowledge in the field of health research and give people a voice.

There are two options for this study:
Option 1: You will be asked to take some photos of your daily life that are related in some way to the fact that you are an LGBTQ person with MS. These photos would be taken over a period of two weeks. After those two weeks, you'll be asked to send 5-10 of the photos to the research team. You’ll then be invited to an interview (by phone, or electronically, e.g., Skype) with the researcher, during which there will be a discussion around the photos and the meanings behind them. The researcher will also ask questions about your experience as an LGBT person with MS. 

Option 2: You can opt out from the photographic part of the study and just have a discussion with the researcher (by phone, or electronically, e.g., Skype) about your experience of being LGBTQ with MS.

For more information: http://health-research.wix.com/lgbt-and-ms
Inclusion criteria: LGBTQ person living with MS, over 18 years old.

Cannabis use and symptoms associated with neurological diseases: An anonymous online survey

The Colorado State University Integrative Neurophysiology Laboratory is studying the impact of fatigue and physical disability in people with neurological conditions. This announcement is for a current project investigating the benefits and consequences of cannabis use for the treatment of symptoms of neurological conditions. Investigators are looking for volunteers, 18+ years of age and diagnosed with a neurological condition (e.g. Multiple Sclerosis, Parkinson’s, Essential Tremor, TBI, Dementias, etc.) to take this anonymous online survey. The survey will take approximately 15-30 min to complete. 

Click here for the anonymous online survey:

For more information, please email HES-INPL@colostate.edu

Mothers with MS

Researchers at Northern Illinois University are looking for mothers diagnosed with Multiple Sclerosis to participate in an online study. Participants will be asked questions online about illness severity, how you feel about yourself, parenting behaviors, relationship(s) with other individuals responsible for your child, and your child’s psychological functioning. This should take between 30-45 minutes to complete. 
 
Eligibility Criteria:
·         Must be at least 18 years old
·         Must be diagnosed with Multiple Sclerosis
·         Must have at least one child aged 6 to 18
·         Must be able to read and write English

Click here to participate in the survey. 

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

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.

Employment Study

The Rehabilitation Research and Training Center (RRTC) at Virginia Commonwealth University (VCU) is conducting a study of adults with physical disabilities.  They want to know about barriers to employment as well as resources to support work / career goals.  In addition, they are interested in knowing how participants find information on employment services and supports. The target groups for the study are:
 
Adults with cerebral palsy, spinal cord injury, multiple sclerosis, or other physical disabilities; and
Young adults ages 18 to 24 with any type of physical disability. 

To be eligible to participate, participants must be between the ages of 18 and 65, a U.S. citizen, be able to provide legal consent, and be a member of one of the targeted groups above.
 
Participants will complete an online survey requiring approximately 20 minutes. 
 
Click here to read more about the study, review the survey questions, and give consent.
 
For more information, please contact:
Dr. Katherine Inge
VCU-RRTC
P.O. Box 842011
Richmond, Virginia 23284-011
kinge@vcu.edu
804-828-5956
TTY: (804) 828-2494
 
This research is sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research (#H133B130011).

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.

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  

Examining Mindfulness and the Workplace Accommodations Request Process

Researchers at the Florida State University are looking for individuals with disabilities who would like to participate in an online research study aimed at exploring mindfulness and the decision to request workplace accommodations. The survey will include questions about participants and the organizations that they are working with, as well as questions pertaining to their perceptions, abilities, and emotions regarding the job accommodation request process. This survey will take approximately 20 minutes to complete.


If you are an individual with a disability (18 years or older), and have had a need for a workplace accommodation within the past three months, please click the link below to get more information and to get started.

https://fsu.qualtrics.com/SE/?SID=SV_8G4a8EiZAXIIQct

If you have any questions about the research study itself or need alternative formats of the survey, you can contact Stacy Rademacher by email at workplace_accommodation@fsu.edu.
 

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.

 

Examining self-compassion and health-related quality of life for individuals with MS

Studies have shown that individuals with MS report lower rates of physical activity than the general population. Research is needed to examine how to increase individual’s physical activity to improve quality of life in this population. Researchers at Oregon State University are conducting a study to investigate the relationship of self-compassion on resilience, physical activity, and quality of life for individuals with MS. They are inviting people with MS to participate in an online survey to gather information.       

  • The survey takes approximately 20 to 30 minutes to complete.
  • If you are between the ages of 18 and 65, can communicate in English, and have a medical diagnosis of MS, you are eligible to participate in this study.
  • Participation in the survey is voluntary and all survey data will be deidentified.

Click here for the survey

If you are interested or have any questions, please contact the research team at: nerym@onid.oregonstate.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.
 

Mind-body practices to support wellness in people with MS - San Diego, CA

Researchers at the University of California, San Diego are conducting research on complementary mind-body practices to support wellness in people with relapsing-remitting MS, including guided journaling and guided imagery.  The study involves a phone screening session, a 2-hr initial session at UCSD, and then ten further 1-hour sessions (1 per week) either at UCSD School of Medicine (Hillcrest location), or at home on your own, depending on which branch of the study you are assigned to.  Scheduling is flexible.  If you would like to schedule a phone screening, please contact Dr. Case at lkcase@gmail.com.

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

Looking for participants for an online survey for mothers with physical or mobility disabilities

UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy.  To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities.

If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff.

If you are eligible, participation involves about 20 minutes of your time, answering questions about your health care experiences during your most recent pregnancy. The survey is anonymous; you will not provide any contact information.

Seeking controls without MS to help develop cognitive tests for MS - West Orange, 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 signficant mental health disorder (e.g., bipolar disorder, psychosis). Please contact Monika Michalec at 973-324-8428, or mmichalec@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.

MS and experiences of Trauma and Growth

The Marginalization, Mental Health, and Empowerment Team at Teachers College, Columbia University is looking for individuals who would like to participate in a research study exploring the life experiences of individuals with MS. The survey will include questions on social support, posttraumatic stress, life satisfaction, depression, and background/demographic information. This survey should take about 15-20 minutes.

Eligibility Criteria:
• Must be at least 18 years old
• Must be diagnosed with Multiple Sclerosis
• Must live in the U.S.

Click here to begin the survey.

This study has been approved by the Teachers College, Columbia University Institutional Review Board: Protocol #15-085. If you have any complaints, questions, concerns, or would like to know the results, please contact jessica.esposito@tc.columbia.edu

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.

Simulated Environments and Everyday Functioning in People with MS and other Neurological Conditions

Washington State University is looking for individuals with MS to participate in an ongoing study in Spokane, WA.  The purpose of the study is to evaluate how various neurological conditions impact everyday functioning.  The project also aims to understand that deficits that result from MS and to develop an ecologically valid assessment using a simulated environment that can help understand everyday functioning in individuals with cognitive impairment.

The study takes approximately 3 hours to complete and is conducted at St. Luke’s Rehabilitation Institute in Spokane, WA.  Participants will be asked to complete several tasks, which are similar to solving problems or games, and to complete several tasks of daily living in St. Luke’s Community (a simulated environment). 

Participants will receive a free neurocognitive report detailing performances on tasks of memory and thinking abilities, and will be compensated. 

Requirements: 
• Diagnosed with a neurological condition, such as multiple sclerosis, or have a neurologic injury, such as a traumatic brain injury or stroke. 
• Be able to speak English fluently
• Have no current psychoactive substance abuse
• Have no diagnosis of dementia

Contact: If you are interested in participating in the study or have any questions about the study, please contact WSU’s Memory and Aging Lab at (509) 335-4033 or email Kayela Robertson at k.robertson@email.wsu.edu.
 

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 in California recruiting patients and first-degree relatives of people with MS for stem cell research study

Researchers from the University of California, San Diego and the Salk Institute, La Jolla, CA are recruiting people with MS who have a parent with MS and a non-affected sibling to give a small skin punch biopsy. The purpose of this study is to convert skin cells (fibroblasts) from MS patients and relatives into a stem cell-like stage to study MS pathology, the process of myelination, and potential novel therapies for MS. (Read more about research involving skin cells.)The study is led by Dr. Jody Corey-Bloom at the University of California, San Diego (UCSD) MS Center and Dr. Rusty Gage at the Salk Institute in La Jolla, CA.

The Study: Investigators are recruiting MS patients who have a parent with MS and a non-affected sibling. Subjects will be asked to donate a small skin punch biopsy from the hip, administered using a 4 mm-blade following local anesthesia. The study would involve a one-time visit. There is no cost to participate in the study, and participants can reside anywhere in the United States as long as they are willing to travel to San Diego to enroll in the study. There are no exclusionary criteria based on age, gender, race, or ethnicity. Persons exhibiting bleeding difficulties, receiving anticoagulation therapy, or who are allergic to the anesthetic involved in the skin biopsy procedure, will be excluded.  

All participants are assigned a unique study identification number to ensure complete confidentiality.

Contact: For more information about this study, please contact
Jody Corey-Bloom, MD, PhD
Phone: 858-246-1288
**Email (preferred for more rapid response): jcoreybloom@ucsd.edu

Thoughts, emotions, and adjustment to multiple sclerosis - the teaMS study

Researchers at University at Albany, SUNY, are carrying out a study to learn more about thoughts, emotions, and adjustment to MS. They are interested in YOUR experience living with MS. The answers may ultimately help to better understand how people with MS adjust to life with this disease. The anonymous and confidential questionnaire is online and will take approximately one hour to complete. Questions cover the course of MS, physical and mental health history, MS symptoms (mobility, fatigue, cognition, etc.), sources of support, responses to stress, and demographics.


For more information, please contact Liz at eraffanello@albany.edu

Click here for the secure study website

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.

Multiple sclerosis and pregnancy

The MotherToBaby's Autoimmune Diseases in Pregnancy Project conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated at the University of California, San Diego is following pregnant women with multiple sclerosis and other autoimmune diseases.

Through phone interviews, researchers are evaluating the possible effects of multiple sclerosis, and/or the medication to treat it, on pregnancy outcome, including a child's physical and developmental growth. Taking part in a study would NOT require a participant to change anything about her normal routine, including taking her prescribed medications. Participation contributes important information about the effects of diseases and medications on pregnancy outcome.

To participate, fill out the secure online referral form on PregnancyStudies.org.

For more information, call the MotherToBaby Pregnancy Studies toll-free number: 877-311-8972.

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.

PML Study

Inhibikase Therapeutics is developing a new treatment to remove the virus that causes PML in patients taking medications for their MS.  If you are a survivor of PML (progressive multifocal leukoencephalopathy, a rare viral infection of the brain that often leads to death or severe disability) who contracted the disease following treatment with natalizumab, Inhibikase Therapeutics would like to involve you in a study to evaluate the quantity of JC polyomavirus in your urine using a simple home test and to obtain a limited amount of information related to your JC polyomavirus antibody level and length of treatment with natalizumab.  Please contact Dr. Milton Werner, Inhibikase Therapeutics, Inc. at mhwerner@inhibikase.com for further information.

Share

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™

The National MS Society is Here to Help

Need More Information?

We Are Here

Our MS Navigators help identify solutions and provide access to the resources you are looking for. Call 1-800-344-4867 or contact us online.





Contact Us

Contact Us
Newly Diagnosed

If you or someone close to you has recently been diagnosed, access our MS information and resources.

Start Here

Start Here