Researchers are committed to finding out what causes MS and how to cure it. People living with the disease may hold the key, and without their participation MS research would come to a standstill. People with MS, and sometimes family members, can make a difference by donating their DNA from blood samples and by volunteering for clinical treatment trials and other studies. They can also make arrangements to donate their brain and spinal cord tissues.
Participate in Clinical Trials
Clinical trials are scientific studies designed to test the safety and efficacy of new agents or regimens for treating disease. Without people with MS who are willing to serve as volunteers in these studies, we could not look forward to new and better therapies.
Participate in Genetic Studies
Researchers around the world are collaborating to find the genes that make people susceptible to developing MS and other autoimmune diseases. These studies are fed by the participation of people with MS and their family members who donate blood samples from which DNA is derived.
Donate to Tissue Banks
Three MS tissue banks are supported by the National MS Society to provide researchers with brain and spinal cord samples from people who had MS in their lifetimes, as well as from people without MS. It is important to plan in advance to arrange this important gift.
Pregnancy Registries
Since MS primarily affects women of childbearing age who can become pregnant unintentionally, it is extremely important to acquire information about how interferon beta medications can affect pregnancy and unborn children. In August 2002, the Food and Drug Administration issued guidelines requiring the manufacturers of these medications to develop pregnancy registries to monitor women who have taken one of these drugs within a week of becoming pregnant or while they were pregnant.
Surveys
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.
- Study participation is voluntary and anonymous. No identifying information will be collected.
- Both participants must be 18 years of age or older.
- E-mail rspencer@umbc.edu for study-related questions.
- Click here to go to the survey.
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:
- Click here for Part 1: National Survey Study of Barriers and Exercise/Physical Activity Participation
- Click here for Part 2: MS related Questions and Preference of Exercise
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.
"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.
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.
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.
Enhancing Management of Chronic Illness
Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to people with chronic illnesses.
The researchers are seeking participants to complete an online survey that asks about the challenges that people face when they have a chronic disease, how they cope with these challenges, and how they get information about their disease and its treatments. It will take about 45 minutes to complete the survey online, but it can be completed in several shorter sessions if you prefer. If you prefer to participate in the study by telephone, please call the contact below to arrange for a scheduled phone interview.
- Participants should have a chronic illness such as multiple sclerosis, or are a caregiver of someone with a chronic illness.
- Participants must be 18 years of age or older.
- Click here to go to the survey.
- For questions and comments contact Jennifer Jaff at (860) 674-1370.
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.