Frontotemporal Dementia: Genes, Images and Emotions

Purpose of the Study

The purpose of this study is to help understand the clinical, genetic, imaging, emotional and diagnostic features of frontotemporal dementia (FTD). The study will collect longitudinal clinical, imaging, behavioral and autopsy data to be analyzed with the goal of improving clinical care for patients with FTD.

Study Details

Inclusion Criteria: Participants must be between the ages of 35 and 80 and meet criteria for either the frontotemporal dementia (FTD), Alzheimer's disease (AD), corticobasal degeneration (CBD), progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS) or healthy aging group. Participants will need a reliable study partner who has frequent contact with the participant, is available to provide information about the participant, and who can accompany the participant to research visits as needed. Participants must be willing and able to have brain MRIs through the course of the study and have a Mini Mental State Exam (MMSE) score of 15 or greater at the time of screening. Anyone not meeting these criteria will need to be approved by the study director.

Exclusion Criteria: A history of Korsakoff encephalopathy, alcohol abuse or dependence within five years of the onset of dementia, substance abuse, head trauma with a loss of consciousness greater than 30 minutes, brain tumor, multiple sclerosis, epilepsy, Parkinson's disease, communicating or noncommunicating hydrocephalus, schizophrenia, bipolar affective disorder, intracerebral hemorrhage, B12 deficiency, hypothyroidism, HIV positive, renal failure, liver failure, respiratory failure requiring oxygen, dementia due to a condition other than those described above, cerebral infarct, large white matter lesions, significant systemic medical illness. Current medication likely to affect CNS functions: benzodiazepines more than three times weekly, no diazepam or triazolam but other short-acting benzodiazepines are fine; no amitriptyline or doxepin, SSRIs and other tricyclics are fine; no lithium; no neuroleptics in the phenothiazine or haloperidol families; no narcotics, codeine is fine but cannot be taken for 24 hours prior to cognitive testing; no anticonvulsants outside therapeutic ranges; and no antihistamines that are taken more than three times weekly, cannot be taken for 24 hours prior to cognitive testing.

What to Expect

Testing: Neurological and physical examinations; interview with study partner; MRIs and PET imaging; cognitive testing; detailed family history; blood specimen collection for genetic testing and cell line generation; behavioral, emotional and personality testing; questionnaires for participant and study partner; pre-consent to obtain a brain autopsy. Participants will be asked to participate in additional studies affiliated with this project.

The Frequency of Visits: Depending on the individual, there will be an initial weeklong visit. A minimum of four days, typically from 9 a.m. to 5 p.m., will be required. These days can be scheduled consecutively or split for convenience. Participants will be asked to return for a shorter visit in one year. Subsequent annual follow up may be in person or over the phone for up to three years. If participating in affiliated studies, the visit schedule could change.

Materials Needed Before Evaluation: MRI scan and medical records

Costs: No costs will be charged for any of the study procedures. Parking will be validated for the 1625 Owens Street Garage or 1630 Third Street Garage at the UCSF Mission Bay campus for all study visits. Participants are responsible for their travel to San Francisco and hotel, should they choose to stay in one. Cab fare will be provided.

Contact Information

If you are interested in participating in this study or have any questions, please contact the nurse manager, Robin Ketelle, RN, MS, at [email protected] or 415.514.2058. For patients with providers outside of the UCSF system, please fax your records for review to 415.885.7253.