Table 1.
Examples of cohorts to study neurodegenerative disease.
| study | participants | no of participants | no. of years | measures | location |
|---|---|---|---|---|---|
| ‘PREVENT’ (Alzheimer's disease) https://preventdementia.co.uk/for-researchers/ | 40–59 years old | 700 | 5 years | cognitive assessments, MRI, genetics, biomarkers (blood and CSF in some) | UK and Ireland |
| EPAD (European Prevention of Alzheimer's Dementia) https://ep-ad.org/ | aged over 50—no dementia diagnosis | 2100 | 2015–2020 | cognitive assessments, brain scans, samples | Europe |
| ADNI (Alzheimer's Disease Neuroimaging Initiative) https://adni.loni.usc.edu/ | those with AD, elderly controls and those with MCI | approx. 1900 | 2004– (4 phases) | brain scans, genetic profiles, fluid biomarkers, neuropsychology | North America, worldwide |
| PiPPIN (Pick's Disease and Progressive Supranuclear Palsy Prevalence and Incidence Study) https://ftd.neurology.cam.ac.uk/PIPPIN | people with syndromes associated with frontotemporal lobe degeneration | 365 | 2013– (3 phases) | blood test, neuropsychological tests, MRI scans | UK |
| GENFI (Genetic Frontotemporal Dementia Initiative) https://www.genfi.org/ | people with or at risk of familial frontotemporal dementia | 1100 | 2012–2022 | cognitive, motor and oculomotor assessment, MRI, genetics, biomarkers (blood and CSF) | Europe and Canada |
| Insight 46 CNS sub-study of 1946 British Birth Cohort https://nshd.mrc.ac.uk/study-member-information/current-studies/neuroimaging/ | study members selected at random from those who attended a clinical visit at 60–64 years | 500 | 2015–2019 | clinical, neuropsychological, β-amyloid PET and MRI, biomarker and genetic information | UK |
| OASIS-3 (Open Access Series of Imaging Studies) https://www.medrxiv.org/content/10.1101/2019.12.13.19014902v1 | 609 cognitively normal adults and 489 individuals at various stages of cognitive decline ranging in age from 42 to 95 years | 1098 | 30 years | neuroimaging, clinical, cognitive and biomarkers | USA |
| AIBL (Australian Imaging Biomarkers and Lifestyle Study of Ageing) https://aibl.csiro.au/ | patients with Alzheimer's disease (AD), mild cognitive impairment (MCI) and healthy volunteers | 1000 + patients (minimum age 60 years) | 2006–2011 | MRI, PiB PET images and clinical data | Australia |
| DIAN (Dominantly Inherited Alzheimer's Network) https://www.alzheimers.gov/clinical-trials/dominantly-inherited-alzheimer-network-dian#description | familial AD-causing mutation carriers and their children | 700 | 2009–2024 | abnormal amyloid in the brain and spinal fluid, changes in brain size and brain metabolism | USA |
| PPMI (Parkinson's Progression Markers Initiative) https://www.ppmi-info.org/ | 4000 participants from 50 international sites at all stages of disease from prodromal to moderate and healthy participants | approximately 4000 in-person, plus more remote/online | 2010 (2 phases) | clinical features, imaging outcomes, biologic and genetic markers, and digital outcomes | worldwide |
| ‘Track-HD’ (Huntington's disease) https://portal.dementiasplatform.uk/CohortDirectory/Item?fingerPrintID=TRACK%20HD | individuals without HD but carrying the mutant HTT gene (i.e. premanifest HD), patients with early HD and healthy control individuals matched by age and sex to the combined HD | 123 controls, 120 premanifest gene carriers and 123 early HD | 2010–2013 | 3 T MRI, clinical, cognitive, quantitative motor, oculomotor and neuropsychiatric assessments | Leiden, London, Paris and Vancouver |