TABLE 1.
Multicenter DLB consortia recruiting participants as of March 22, 2021
| Name Website Country | Year established | Enrolled patients with DLB (n) | Neuropathology/ CSF | Blood | Genetic | MRI | FDG‐PET | DaTSCAN | EEG | Funder(s) |
|---|---|---|---|---|---|---|---|---|---|---|
| EUROPE | ||||||||||
| European DLB Consortium (E‐DLB) www.e‐dlb.com Multinational | 2016 | 1437* | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | European Joint Program—Neurodegenerative Disease (JPND) |
| PDWAVES www.pdwaves.eu Multinational | 2014 | 60* | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | n/a |
| Italian DLB consortium** Italy | 2016 | 187* | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Italian Minister of Health | |
| UK‐ENLIST** United Kingdom | 2019 | 19* | ✓ | ✓ | ✓ | x | x | x | x | Alzheimer's Research UK |
| NORTH AMERICA*** | ||||||||||
| Comprehensive Assessment of Neurodegeneration and Dementia (COMPASS‐ND) www.ccna‐ccnv.ca Canada | 2017 | 30* | ✓ | ✓ | ✓ | ✓ | x | x | x | Canadian Institutes of Health Research |
| DLB Consortium (DLBC) https://pdbp.ninds.nih.gov/index.php/Dementia‐with‐Lewy‐Bodies‐Consortium USA | 2017 | 122* | ✓ | ✓ | ✓ | ✓ | x | ✓ | x | NINDS |
| Alzheimer's Dementia Care (ADC) program https://naccdata.org/ USA | 1985 | 824a | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | x | NIH‐NIA |
| Longitudinal Imaging Biomarkers of Disease Progression in DLB USA | 2018 | 69 | ✓ | ✓ | ✓ | ✓ | x | ✓ | x | NINDS |
| SOUTH AMERICAc | ||||||||||
| Multi‐partner consortium to expand dementia research in Latin America (ReDLat) Multinational | 2019 | 210 a | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | NIH‐NIA; Alzheimer's Association; Rainwater Charitable Foundation (Tau Consortium); Global Brain Health Institute; Takeda |
| Brazilian Biobank for Aging Studies Brazil | 2004 | 87a | ✓ | ✓ | ✓ | x | x | x | x | São Paulo Research Foundation (FAPESP) |
| DLB Consortium (COL‐DLB) Colombia | 2019 | 1 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | n/a |
| ASIAc | ||||||||||
| Tianjin Dementia Institute China | 2016 | 512 | x | ✓ | x | ✓ | ✓ | x | ✓ | National research on the prevention and control of major chronic non‐communicable diseases |
| Dementia collaborative research network (PKU‐DCRN) | ||||||||||
| China | 2006 | 220 a | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Ministry of Science and Technology |
| The Innovation Center for Neurological Disorders (CMU‐ICND) China | 2019 | 50 a | ✓ | ✓ | x | ✓ | ✓ | x | ✓ | Ministry of Science and Technology |
| Dementia with Lewy Bodies Society Japan (DLBSJ) Japan | 2007 | 200 a | ✓ | ✓ | ✓ | ✓ | x | ✓ | ✓ | Japan Foundation for Neuroscience and Mental Health |
| AUSTRALIAc | ||||||||||
| ForeFront DLB Australia | 2017 | 30 a | ✓ | ✓ | ✓ | ✓ | x | x | x | National Health and Medical Research Council (NHMRC) Dementia Research Team Grant; NHMRC‐ARC Dementia Fellowship; NHMRC Investigator Grant |
| Lewy body study Australia | 2018 | 36a | ✓ | ✓ | ✓ | ✓ | x | x | x | Yulgilbar Alzheimer's Research Program |
Abbreviations: ARC, Australian Research Council; CMU‐ICND, Capital Medical University Innovation Center for Neurological Disorders; CSF, cerebrospinal fluid; DLB, dementia with Lewy bodies; EEG, electroencephalography; FDG‐PET, fluorodeoxyglucose‐positron emission tomography; MRI, magnetic resonance imaging; NIH‐NIA, National Institutes of Health National Institute on Aging; PKU‐DCRN, Peking University Dementia Collaborative Research Network.
The initiative also recruits subjects with other disorders/controls; information contained in the table relates only to participants with DLB.
Patients in respective national initiatives are also enrolled in the European DLB Consortium (E‐DLB).
Patients in these regions are enrolled in no more than one of the listed initiatives.