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.
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. Please also see NARCOMS, registry of people willing to participate in MS research initiated by the Consortium of MS Centers to facilitate multicenter 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.
Two 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. In addition, the Accelerated Cure Project has an MS Repository for biospecimens and data from people with MS who wish to contribute to research now.
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.
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.