Observational Studies

Much of the research conducted in frontotemporal degeneration and other neurological disorders is done through observational studies. Researchers observe and document over time the naturally occurring changes in a participant’s health, behavior, and cognitive abilities. Study participants are not required to take any specific medication or new drugs.

Observational studies are typically much larger than clinical trials and allow researchers to gather information from many participants. Epidemiology relies on observational studies to examine how, when and where diseases occur, and what risk factors or protective factors might exist.

Information gathered from observational studies has allowed researchers to gain insight into the course of the FTD disorders. The correlation of clinical findings, neuroimaging results, and post-mortem pathological findings has improved diagnosis, and patient response to prescribed medication has helped guide potential treatment for others. The value of observational studies in FTD will expand as researchers work with families in which a genetic mutation has been identified, and begin to gather information on patients even before the first symptoms are noticeable.

What to expect

Participants in observational studies will typically receive a comprehensive evaluation including a medical history, a medical exam, neuropsychological testing, genetics testing and brain imaging. They will be given information about the disease, medical management services and resources.

Depending on the research study, patients will return for follow-up visits for evaluation to assess changes in functioning on a scheduled basis. As a result of their participation in a study, people may be offered opportunities to participate in support groups, special programs or separate drug trials.

How to participate

Much, though not all, of the work in the U.S. being done in the field of FTD is through physicians within the federally funded Alzheimer’s Disease Research Center network (ADRC). In Canada, several university medical schools and health sciences centers are conducting FTD research.

Each center has its own unique area of emphasis, so you should ask about the particular research programs available and eligibility criteria.  Frequently the cost to the patient of study-related services and evaluations are waived, but you should confirm this before signing on to any research study.

AFTD lists centers with a known interest in FTD on our website on the U.S. and Canadian Regional pages. A full listing of ADRCs can be found through the National Institute on Aging at the National Institutes of Health website.

Visit the website of the National Institute of Neurological Disorders and Stroke (NINDS) Clinical Center in Bethesda, MD for information on research conducted there.