The Importance of Participating in Research
The University of Michigan Alzheimer's Disease Research Center (MADRC) has the distinction of being one of the first centers of its kind in the United States. As one of 29 Alzheimer's research centers funded by the National Institute on Aging, MADRC is making important advancements in understanding dementia by conducting observational studies and researching novel brain imaging techniques, The Center works closely with the Department of Neurology in conducting pharmaceutical and NIA sponsored clinical drug trials.
Approximately 5 million Americans are living with Alzheimer's disease today and a half million new cases are expected to be diagnosed this year. By 2050, due to a larger senior population, there will be nearly a million new cases per year.
Nancy Barbas, M.D., M.S.W., director, Cognitive Disorders Clinic, and associate professor, Department of Neurology, University of Michigan Health System, describes Alzheimer's disease as a chronic, progressive illness. "People can live for 10 or more years with Alzheimer's," she says and adds that there is a lot that can be done to delay the progression of the symptoms and, "The future is much more hopeful."
The future is more hopeful because of research. Barbas says people considering participating in research should be aware that any type of participation helps advance medicine. There are many types of clinical trials. Some are interventional, but there are also research programs that ask participants to take part in surveys or undergo memory testing and examination, perhaps as infrequently as once each year. Barbas encourages people to be open to the possibilities. If someone is not interested in receiving experimental drug treatment, there are other ways they can participate in research.
Barbas says participants enroll in clinical trials for a variety of reasons. Some participants have altruistic reasons, and many people like feeling that they have more intimate access to cutting edge information. Barbas says, "This is a disease that can be very demanding on caregivers. Members of the research team may be viewed as one more contact for information.
Although most of the clinical drug trial research is blinded and placebo controlled (meaning that participants don't know whether they are getting the drug or the placebo), some people participate for the chance at receiving a drug that is not available otherwise.
Another opportunity that research participants appreciate, is that most clinical trials have an extension or open-label phase. As patients complete their participation in the trial, they are offered the chance to continue receiving the drug in a monitored program. These programs end when the FDA completes recommendations or may end at the sponsor's or researcher's discretion. Generally there is no cost to the participant.
Barbas is committed to supporting patients in both the clinical setting and the research setting. She says, "We need to offer good medical care and support services that are addressing the here and now. We want to do better and offer more. Research is looking to the future . . . not settling for what we have today."
Participants with Alzheimer's are needed for a study of Bapineuzumab [PDF].
