TABLE 2.
BHR projects.
| Project | Lead institution | Study type, design, population |
|---|---|---|
| Recruitment in BHR | ||
| Alzheimer’s Prevention Registry (APR) | BAI | Observational, registry recruitment, APR members |
| California Latino-Brain Health Registry (CAL-BHR) *43 | UCSF | Observational, community-engaged registry recruitment, Latino community |
| Study to expand registry participation of underrepresented populations (STEP-UP) * | BAI | Experimental, registry recruitment, Black, Hispanic, male |
| Referrals from BHR to other projects | ||
| ALLFTD mobile app study | UCSF | Observational, validation, mobile tests application validation, cognitively unimpaired controls |
| Alzheimer’s Disease Neuroimaging Initiative 3 (ADNI3)24 | NCIRE | Observational, in-clinic, older adults with or without MCI/AD |
| Alzheimer’s disease neuroimaging initiative-depression (ADNI-D) | UCSF | Observational, in-clinic, older adults with major depressive disorder |
| Alzheimer Prevention Trials (APT) Webstudy | USC | Observational, online registry recruitment, older adults without dementia |
| Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) | Eli Lilly and Company | Experimental, in-clinic phase 3 secondary AD prevention intervention trial, asymptomatic AD |
| β Amyloid Production and Effects on Cognition Study | Merck | Experimental, in-clinic phase 3 randomized placebo-controlled drug treatment intervention, older adults with prodromal AD |
| Butler Alzheimer’s Prevention Registry | Butler Hospital | Observational, recruitment to local Alzheimer’s prevention registry, older adults |
| Caregiver Attentional Awareness Pilot Study | UCSF | Experimental, in-clinic, and at-home iPad application intervention, older adult caregivers |
| Cleveland Clinic Lou Ruvo Center | Cleveland Clinic | Experimental, clinical trial for neurological disease, patients with Alzheimer’s, Parkinson’s, and Huntington’s diseases, multiple sclerosis, and frontotemporal dementia |
| EMERGE Study | Biogen | Experimental, in-clinic phase 3 randomized placebo-controlled drug treatment intervention, older adults with prodromal AD |
| Healthy Mind, Healthy You 93 | MGH | Experimental, online mindfulness intervention, all BHR participants |
| Hillblom Healthy Aging Study | UCSF | Observational, in-clinic observational aging/cognition study, cognitively unimpaired older adults |
| Hoarding behaviors study28,34,38,40,45 | UF | Observational, online registry assessment of hoarding, adults |
| Internet-Based Conversational Engagement Clinical Trial (I-CONECT) | OHSU | Experimental, community-based phase II behavioral intervention trial, socially isolated older adults |
| Phase II RCT of High-dose Vitamin D Supplements in Older Adults | UCD | Experimental, in-clinic, phase II RCT for vitamin D supplements, older adults |
| Repetitive Transcranial Magnetic Stimulation and Dementia Study | PAVAMC | Experimental, in-clinic repetitive transcranial magnetic stimulation veterans with dementia, MCI, or AD |
| Repetitive transcranial magnetic stimulation for mild cognitive impairment | PAVIR | Experimental, in-clinic, transcranial magnetic stimulation for mild cognitive impairment, older adults with noticeable decline in memory |
| Riluzole at Rockefeller | Rockefeller University | Experimental, in-clinic trial, older adults diagnosed with mild AD |
| Smell Study | Monell Chemical Senses Center | Observational, remote smell kit, adults |
| Study of Aging in Latinas/os for Understanding Dementias | Mount Sinai Medical Center | Observational, older Latino adults with and without HIV |
| UC Irvine Alzheimer’s Disease Research Center | UCI | Observational, in-clinic, neurological, cognitive, specimen collection, older adults |
| UPenn Healthy Brain Aging Study | UPenn | Experimental, randomized clinical trial, in-clinic, antidepressant medication effects on production of amyloid beta, healthy older adults |
| Direct-to-Site Referrals | ||
| Alzheimer’s Disease Neuroimaging Initiative 3 (ADNI3): ADNI3.org24 | NCIRE | Observational, recruitment to in-clinic study, older adults |
| Alzheimer’s Disease Neuroimaging Initiative 3 Diversity Task Force (ADNI3 DVT)*95 | NCIRE | Observational, culturally tailored recruitment to in-clinic study, older adults without or with MCI/AD from diverse ethnocultural communities (Black/African American, Latino) |
| Coenrollments | ||
| Alzheimer’s Disease Neuroimaging Initiative 3-Brain Health Registry (ADNI3-BHR)35 | NCIRE | Observational, online longitudinal monitoring, older adults who are cognitively unimpaired, have MCI or AD |
| Biomarker Prediction Study†36 | UCSF | Observational, remote blood collection, plasma biomarkers, older adults |
| Brain Health Registry-Affect: UCSF MAC Collaboration to Study Emotionalityt | UCSF | Survey, online affect-related questionnaires, all BHR participants |
| Brain Health Registry-GenePool Study*†29 | UCSF | Observational, remote DNA saliva collection, older adults |
| Brain Health Registry-Imaging Dementia — Evidence for Amyloid Scanning25,30,44 | UCSF | Observational, online registry participation, older Medicare beneficiaries with objectively confirmed cognitive impairment by a dementia |
| Buck Institute | Buck Institute | Recruitment effort with data-sharing consent for future research |
| Cognition After Surgery & Anesthesia-Brain Health Registry | UCSF | Observational, online longitudinal monitoring, postoperative decline, memory and thinking, MCI, dementia |
| Community Engaged Digital Alzheimer’s Research (CEDAR)* †49,50 | UCSF | Observational, community-engaged research registry engagement study, African American/Black BHR participants |
| Head Impact&Trauma Surveillance Study (HITSS)26 | BU | Observational, development of online head impact and trauma assessment, soccer and American football players |
| Healthy Brain Initiative-Brain Health Registry (HBI-BHR)/ageHAPPY (Healthy Ageing Project Population Youth-senior) | University of Melbourne | Observational, online registry for cognitive aging, adults in Australia |
| Memory assessment results initiative† | UCSF | Observational, pilot study providing unsupervised cognitive assessment results to online registry participants, all BHR participants |
| Striving Together to Prevent & Treat Alzheimer’s Disease | UTHSCSA | Observational, enrollment effort into registry, adults in an ADRC |
| Study to Evaluate Amyloid in Blood and Imaging Related to Dementia-Brain Health Registry | WashU | Observational, in-clinic, amyloid blood test, older adults |
| Veteran Brain Health Registry | NCIRE | Observational, online registry, veterans |
| Development and Validation of Online Assessments | ||
| Cambridge Cognition Paired Associates Learning | UCSF | Observational, remote validation of online unsupervised cognitive assessment, all BHR participants |
| Cogstate Brief Battery19,20,23,26,33 | UCSF | Observational, remote validation of online unsupervised cognitive assessment, all BHR participants |
| Electric Validation of Online Methods to Predict and Monitor Cognitive Declinet †‡27,39 | UCSF | Observational, in-clinic, and remote validation of online unsupervised diagnostic assessment, older adults |
| Lumos Labs NeuroCognitive Performance Tests23,26,37 | UCSF | Observational, remote validation of online unsupervised cognitive assessment, all BHR participants |
| MemTrax Memory Test23 | UCSF | Observational, remote validation of online unsupervised cognitive assessment, all BHR participants |
| Mobile Toolbox Study †‡ | UCSF | Observational, validation of a remote, smartphone-based cognitive assessment app validation, all BHR participants |
| Online neuropsychological test validation project with imaging pilot †‡ | UCSF | Observational, In-clinic and remote, validation of online unsupervised cognitive assessment, biomarkers, older adults |
| ReVeRe†‡31 | UCSF | Observational, in-clinic, and remote validation of online unsupervised cognitive assessment, biomarkers, older adults |
| Software as a Service (SaaS) | ||
| Alzheimer’s Disease Neuroimaging Initiative 4 (ADNI4) * ‡§ | NCIRE | Observational, recruitment to in-clinic, observational study, older adultswithout or with MCI/AD |
| Dutch Brain Health Registry32 | Amsterdam UMC | Observational, online registry for cognitive aging, adults |
| • * Focus on URP | ||
| • † Also a Referral from BHR toOther Projects | ||
| • ‡ Also a Coenrollment | ||
| • § Also a Direct-to-Site Referral | ||
| Lead Institutions | ||
| • BAI: Banner Alzheimer’s Institute | ||
| • UCSF: University of California, San Francisco | ||
| • NCIRE: Northern California Institute of Research and Education | ||
| • USC: University of Southern California | ||
| • MGH: Massachusetts General Hospital | ||
| • UF: University of Florida | ||
| • OHSU: Oregon Health and Science University | ||
| • UCD: University of California, Davis | ||
| • PAVAMC: Palo Alto Veterans Affairs Medical Center | ||
| • PAVIR: Palo Alto Veterans Institute for Research | ||
| • UCI: University of California, Irvine | ||
| • UPenn: University of Pennsylvania | ||
| • BU: Boston University | ||
| • UTHSCSA: University of Texas Health Science Center at San Antonio | ||
| • WashU:Washington University in St. Louis | ||
| • Amsterdam UMC: Amsterdam University Medical Center | ||