Surveys and Other Research Studies - National Multiple Sclerosis Society

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Surveys and Other Research Studies

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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.

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

Learn to manage sadness and depression with an online program

Adults who have a chronic medical condition and struggle with depression may be eligible to participate in a study to determine the effect of an 8-week program to improve depressive symptoms in people with chronic illnesses. The online program is called “Think Clearly About Depression” and is based on principles of Cognitive Therapy.

This program has videos, activities, and lessons designed to help you understand the role that thinking plays in depression. It helps you to learn new skills such as recognizing and replacing negative thoughts and applying constructive thinking. Participants can be compensated for completing online surveys.

This study has been reviewed and approved for human subjects participation from the Washington State University Institutional Review Board. Please contact 509-324-7443 or marian.wilson@wsu.edu for more information.

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.

The research team will create a short report in late 2015 with the results of the research. A more 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).

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

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.

Personality, Beliefs About MS and Adjustment

Researchers at the University of Melbourne, Australia are inviting individuals of all ages with MS to participate in research investigating the links between personality, beliefs about MS and adjustment to the disease.

Participation involves completing an online survey that takes approximately 30 minutes. The survey includes questions about your understanding of your MS, your personality and any experiences you have had with anxiety, depression and/or acceptance of the disease.

This project has been approved by the University of Melbourne Human Research Ethics Committee.

To participate or for more information please contact Elisabeth Morley at emorley@student.unimelb.edu.au

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. Individuals who are gainfully employed OR those considering leaving the workforce or feeling as if they need to cut back on hours are eligible to participate. 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.

To be eligible, participants must be: (1) between the ages of 20 to 64; (2) diagnosed with definite MS; and (3) have no other neurological illness.

If you are interested in participating in this study and meet the above criteria, please contact Anthony Costanzo at 973-324-8444 or acostanzo@kesslerfoundation.org or Lauren Strober, Ph.D. at 973-324-8459 or lstrober@kesslerfoundation.org. You will then receive an email with a link to complete the study. You will be compensated for your participation.

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.

Life Goals and Purpose in People with MS

Researchers at the State University of New York at Buffalo are interested in studying the relationship between life goals and purpose in life of people diagnosed with MS.  U.S. citizens, over the age of 18 with a diagnosis of MS are eligible to take the online survey.  The questionnaire will take approximately 30 minutes to complete.  Participation is voluntary and information gathered is anonymous and will be kept confidential.  There is no direct compensation for this study.  It is hoped that the research will help improve services for individuals with MS in the future. 

Click here to go to the survey.

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.

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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™