Observational Studies

Your experience – or a loved one’s – can drive research for future gains in FTD diagnosis, treatments, and one day, a cure. Much of the research conducted in FTD is done through observational studies, in which researchers simply observe and document over time the naturally occurring changes in a participant’s health, behavior, and cognitive abilities.

Observational studies are typically much larger than clinical trials and allow researchers to gather information from many participants. Information gathered from these studies has allowed researchers to gain insight into the course of the FTD disorders, helping to improve diagnosis and guide potential treatments.

What can I 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, participants  will return for follow-up visits for evaluation to assess changes in functioning on a scheduled basis. Participants may also be offered opportunities to take part in support groups, special programs or separate drug trials.

How can I participate?

Two comprehensive efforts represent the most important observational studies of FTD in the United States today:

  1. ARTFL Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL) is a natural-history study of FTD, open to anyone with an FTD disorder. ARTFL is funded by the NIH and is part of the Rare Diseases Clinical Research Network.
  2. LEFFTDS – The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) conducts longitudinal studies of individuals who have mutations in the three genes most commonly affected in FTD:  MAPT, GRN, or C9orf72. A primary goal of LEFFTDS is to identify the most robust and reliable methods to track disease progression in familial FTD so that disease-modifying therapeutic trials can be designed appropriately.

Much  FTD research in the U.S. is conducted by physicians within the federally funded network of Alzheimer’s Disease Research Centers (ADRCs). In Canada, several university medical schools and health sciences centers are conducting FTD research. AFTD lists centers with a known interest in FTD on our website on the U.S. and Canadian Regional pages.

Each ADRC 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.

The National Institute of Neurological Disorders and Stroke Clinical Center in Bethesda, MD also conducts observational studies. Visit its website for more information.

Finally, The FTD Disorders Registry also features ways to participate in research, to spur innovation that will lead to effective treatments and therapies.