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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.

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 Lilyana Amezcua, MD, at lamezcua@usc.edu, or Maura Fernandez, MD (coordinator), at  maura.fernandez@med.usc.edu, or call 1-323-442-6870.

Researchers Recruiting African Americans with MS and Family Members Across the U.S. for Genetics Studies

Investigators at the University of California, San Francisco, are recruiting African Americans with MS and their family members across the country for genetic studies. For one study, the team is looking for an African American family that has three generations of family members with MS, or a family with multiple people with MS within one generation. There is no cost to people who agree to participate. Read more about this study.

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.

What Triggers MS in Kids? Pediatric Network and Other Sites Recruiting for Study of Environmental and Genetic Risk Factors

Investigators nationwide are recruiting 640 children with early relapsing-remitting MS or CIS (clinically isolated syndrome, a single episode of MS-like symptoms) and 1280 children without MS or CIS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. Read more about this study.

Increasing Physical Activity in People with MS Using an Internet-Based Program

Investigators at the University of Illinois are examining the influence of an internet-based program for increasing physical activity in people with MS. As a participant you will be randomly assigned to a physical activity program or a control program for 12 weeks. (If you are in the control program you will have access to the physical activity program after the study period.) Participation in either group involves completing a battery of questionnaires that assess physical activity, walking mobility, quality of life, and beliefs about exercise, as well as wearing an accelerometer for 7 days as a way of measuring your movement. You will complete the questionnaires before, after, and three months after the study period. All materials will be delivered and returned via pre-stamped and pre-addressed envelopes. Participants will be compensated for completing the program.

Participants should be between ages 18-64, diagnosed with relapsing-remitting MS, have internet access, be inactive, and be ambulatory with or without assistance.

For more information or to participate, contact Elise McAuley by telephone, (888) 796-7966; or e-mail, inphaims@gmail.com.

University of Memphis Career Study

Investigators at the University of Memphis are conducting a study on career decisions for adults (age 18 or older) with multiple sclerosis. The study is examining how adjustment to the disease impacts career decisions, in order to assist in developing interventions to improve career decisions. The study can be completed online in 15 minutes. If you are interested in participating, please email dlustig@memphis.edu and type "study" in the subject line to obtain the link and a password.

Treatment preferences in people with relapsing-remitting MS

Oxford Outcomes is conducting research to understand patient preferences with respect to the potential effectiveness and side effects of treatments for people with relapsing-remitting MS (RR MS). They are seeking to recruit up to 400 people with RR MS who are residents of the United States, 18 years of age or older, have adequate written and oral fluency in English, and are willing and able to provide written informed consent

Eligible subjects will be directed to a secure web server which will host preference and demographic questionnaires. The questionnaires should take approximately 30-45 minutes to complete. Subjects will be compensated upon completion of the questionnaires online.

The preference survey will ask subjects to rate desirability of various attributes of MS treatments, such as potential side effects, effectiveness, and administration regimen, and to indicate their preferences among hypothetical MS treatments. The clinical and demographic questionnaire will ask patients about their MS treatment and management experience as well as a set of demographic questions.

For more information or to participate, please contact Alexis or Tina, toll-free, at 1-866-893-0282, or e-mail Alexis at alexis.french@oxfordoutcomes.com.

Mothers with Multiple Sclerosis  

Women with MS who have made childbearing decisions are invited to participate in a study that may help healthcare professionals understand and better advise women with these decisions. Specifically, if you are between the ages of 18-45, were diagnosed with MS in the past 10 years, have experienced a pregnancy and motherhood since your diagnosis, but did not bear or parent a child prior to your diagnosis and are not currently pregnant, you are invited to participate in a research study conducted by Megan Castano, a doctoral Counseling Psychology student within the Department of Professional Psychology and Family Therapy at Seton Hall University in South Orange, NJ.

This study consists of a brief questionnaire and a phone interview about your experiences. If you would like to participate in this study, or would like more information, please contact Megan Castano via electronic mail at megan.castano@student.shu.edu, with a mailing address where study material may be sent for your review. If you have any questions, you may contact Megan Castano, doctoral student, or Dr. Pamela Foley, faculty sponsor, at (973) 275-9450.

Study of Functional Performance in MS Enrolling in Philadelphia

Drexel University in Philadelphia is conducting a research study examining the performance of everyday activities such as using a telephone, paying bills, and driving in people with MS. They are currently seeking research participants between 21 and 60 years of age who have had a diagnosis of MS for at least one year. Participants need to  come to Drexel University for 1 visit lasting approximately 5 hours, and will be asked to complete some paper and pencil tasks, computer tasks, and drive a virtual reality driving simulator. At the completion of the study, participants will be compensated.

All information is confidential and strictly used for research purposes only. To participate, or for more information, please contact Maria T. Schultheis, PhD, at (215) 895-6105, or email Dr. Schultheis at schultheis@drexel.edu.

Promoting the Health of Cancer Survivors with Pre-existing Functional Limitations

Dr. Heather Becker at the University of Texas at Austin School of Nursing is studying health promotion among cancer survivors who had a prior disabling condition. The team is seeking to recruit 150 people nationwide who had a diagnosis such as MS prior to their cancer diagnosis and have completed active treatment for their cancer. Compensation will be provided upon completion of the mailed survey.

Participation is voluntary and information gathered is anonymous and will be kept confidential. The information you provide will help health care providers work more effectively with survivors such as yourself.

If you would like to participate, please contact Dr. Becker at 1-800-687-8010 or heatherbecker@mail.utexas.edu.   

Quality of Life in People Using Catheters for Bladder Problems

Investigators at the University of Pittsburgh are gathering data related to general health related quality of life among people using intermittent catheterization to manage chronic urinary retention. Data will also be collected to describe complications that these patients have experienced while using this intervention, the barriers that they perceive to implementing it, and their adherence to their prescribed catheterization schedule. Subjects for this study will be men and women older than 18 years who have been diagnosed with chronic urinary retention and who have either used intermittent catheterization in the past or are currently using intermittent catheterization to manage their bladder problem.

Participants will fill out questionnaires sent and/or administered via mail and phone, and will be compensated upon completion of the study.

For more information, please call 412-624-1210 or 888-351-9488.

"Hidden" Disabilities in College Students with MS

To tell or not to tell is a question faced by everyone with MS. Researchers at the University of Southern Maine are seeking to recruit 200 college students nationwide who identify themselves as having a "hidden disability" -- a disability that is not always seen or perceived by others. Participants will complete a survey that includes questions about demographic information, as well as questions about their experiences with disclosing their hidden disabilities in an educational setting, and the various supports from their educational environment that have helped them.

To participate, please email hiddendisabilitiessurvey@yahoo.com, and the survey will be sent to you.

For questions and comments contact please contact Julie R. Alexandrin at jalexandrin@usm.maine.edu or Ilana Lyn Schreiber at ischreibe@hotmail.com.  

Home-based physical activity intervention in individuals with MS

This research is being conducted by researchers at Oregon State University in Corvallis, Ore. The goal of this study is to investigate the feasibility and potential effectiveness of a motivational home-based physical activity intervention utilizing interactive communication technology in people with MS. There are three phases in this study: a survey, a focus group, and a study of the intervention. Participants can participate in any or all of these phases. People who are 18-65, are diagnosed with MS, and are ambulatory using minimal assistance are invited to participate. Survey links are as follows: 

For questions and comments contact Ms. Alicia Dixon, 541-737-5927, dixona@onid.orst.edu; or Dr. Miyoung Lee, 541-737-4649, miyoung.lee@oregonstate.edu.  

How Uncontrolled Laughing and Crying Affects Quality of Life

Robert Spencer, MS, and colleagues at the University of Maryland, Baltimore, are seeking participants for an online survey that examines how uncontrolled laughing and crying — a symptom of multiple sclerosis — affects quality of life.

This 15-minute survey requires the joint participation of an individual with MS and someone who has regular contact with that person. The survey begins with a brief explanation of the study and a consent document. The survey asks questions of the individual with MS and concludes with questions for the person who interacts with them on a regular basis. All questions concern the health, quality of life, and emotional experiences of the individual with MS.