Summary

• Study director: Bruce Miller, MD [1]
• Sponsor: National Institute on Aging
• Recruiting?: Yes
• Official study title: New Approaches to Dementia Heterogeneity
• Conditions studied: Alzheimer's disease (AD) [2], behavioral variant frontotemporal dementia (bvFTD) [3], semantic dementia (SD) [4], primary progressive aphasia (PPA) [5], progressive nonfluent aphasia (PNFA) [6], corticobasal degeneration (CBD) [7], Creutzfeldt-Jakob disease (CJD) [8], dementia with Lewy bodies (DLB) [9], progressive supranuclear palsy (PSP) [10], mild cognitive impairment (MCI) [11], healthy aging [12] and other neurological conditions which affect memory or thinking with the exception of vascular dementia (VaD) [13].
• Purpose: The purpose of this 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.
• More information: The UCSF Alzheimer’s Disease Research Center (ADRC) [14]

Eligibility

• Inclusion criteria: Participants must be age 18 or greater and meet criteria for either Alzheimer's disease (AD) [15], behavioral variant frontotemporal dementia (bvFTD) [16], semantic dementia (SD) [17], primary progressive aphasia (PPA) [18], FTD with amyotrophic lateral sclerosis (FTD-ALS) [19], corticobasal degeneration (CBD) [20], Creutzfeldt-Jakob disease (CJD) [21], dementia with Lewy bodies (DLB) [22], progressive supranuclear palsy (PSP) [23], other rapidly progressive dementia, mild cognitive impairment (MCI) [24] or healthy volunteer [25]. 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 time of screening. Anyone not meeting these criteria will need to be approved by the Study Director [26].
• 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) [27], 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 OK), antidepressant therapy with amitriptyline or doxepine or treatment not stable during past year, lithium, neuroleptics in the phenothiazine and haloperidol families (atypicals OK), narcotics (codeine is OK, 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 is involved?

• Testing: Neurological and physical examinations; interview with study partner; MRIs; 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. Participants may be asked to participate in additional studies affiliated with this project.
• Frequency of visits: Depending on the individual, there will be 2 to 4 visits over a three month period of time, each year for up to five years.
• Materials needed prior to evaluation: None
• Costs: No costs will be charged for any of the study procedures. Parking will be validated for Millberry Parking Garage for study visit. Participants are responsible for their travel and hotel, should they choose to stay in one.

Contact information

• Coordinator: Kari Haws [28], 415-476-3722