ADRC: New Approaches to Dementia Heterogeneity

UC San Francisco is one of 31 national Alzheimer’s Disease Research Centers (ADRCs) located across the United States, all of which work to help understand the multiple features of aging and dementia.

Purpose of the Study

The purpose of our center’s study is to collect information from various tests of brain function with the goal of improving early detection and clinical care for patients with dementia. Information is collected longitudinally and includes clinical, imaging, behavioral and autopsy data.

Study Details

Inclusion Criteria: Participants must be age 18 or greater and meet criteria for either Alzheimer’s disease (AD), behavioral variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), semantic variant PPA (svPPA),  FTD with amyotrophic lateral sclerosis (FTD-ALS), corticobasal degeneration (CBD), Creutzfeldt-Jakob disease (CJD), dementia with Lewy bodies (DLB), progressive supranuclear palsy (PSP), other rapidly progressive dementia, mild cognitive impairment (MCI) or healthy volunteer. 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 AND/OR a CDR less than 2 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 5 years of the onset of dementia, substance abuse, head trauma with persistent deficits and a loss of consciousness greater than 30 minutes, CNS lesions deemed to be clinically significant, epilepsy or seizure disorder not due to correctable metabolic abnormality, hydrocephalus, intracerebral hemorrhage, ischemic vascular dementia (VaD), multisystem atrophy, multiple sclerosis or other demyelinating disease, encephalitis or meningitis, untreated B12 deficiency, untreated hypothyroidism, untreated syphilis, positive HIV status, renal insufficiency requiring dialysis, symptomatic liver disease, anxiety disorder (not due to dementia and requiring medication more than 3 times per week), severe periventricular white matter disease or greater than grade 4 white matter lesions, lacunar infarcts deemed to be clinically significant, cortical stroke, respiratory condition requiring oxygen, or significant systemic medical illness such as cancer requiring chemotherapy or end stage cardiac insufficiency, pacemaker, ferromagnetic material (in soft tissue), benzodiazepines (no triazolam, but other short-acting benzodiazepines are okay), antidepressant therapy with amitriptyline or doxepine or treatment not stable during past year, lithium, neuroleptics in the phenothiazine and haloperidol families (atypicals okay), narcotics (codeine is okay, but hold 24 hours before neuropsychological testing), anticonvulsants outside of therapeutic ranges, antihistamines (more than 3 times per week; cannot be taken 24 hours before neuropsychological testing).

What to Expect

Testing: Neurological and physical examinations; interview with study partner; cognitive testing; detailed family history; blood specimen collection for genetic testing and cell line generation; questionnaires for participant and study partner pre-consent to obtain a brain autopsy. Some participants may receive imaging and/or a lumbar puncture. Participants may be asked to participate in additional studies affiliated with this project.

The Frequency of Visits: Depending on the individual, there are typically 1–2 visits over a three month period each year for up to 10 years.

Materials Needed Before Evaluation: None

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 and hotel, should they choose to stay in one.

Contact Information

If you are interested in participating in this study or have any questions, please contact the study coordinator, Harli Grant, at Harli.Grant@ucsf.edu or 415.476.3722.