This page provides a comprehensive ranking of available datasets for Frontotemporal Dementia (FTD) and related neurodegenerative disorders research. Datasets are evaluated across four key dimensions: scientific impact, accessibility, sample size, and data richness.
Each dataset is scored on a 1-5 scale across four dimensions:
Path: Genetic FTD cohorts
Sample Size: ~3,000+ participants
Data Types: Genetic, clinical, neuroimaging, CSF biomarkers
Accessibility: 4/5 (requires collaboration application)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★★ |
| Accessibility | ★★★★☆ |
| Sample Size | ★★★★★ |
| Data Richness | ★★★★★ |
Description: GENFI is the largest international consortium for genetic FTD research, established in 2012. It encompasses participants with pathogenic variants in C9orf72, MAPT, and GRN genes, along with family members and healthy controls. The consortium has enabled numerous breakthrough discoveries including understanding of disease progression, biomarker development, and therapeutic target identification.
Key Publications:
Access: GENFI Consortium Website
Path: US-based genetic FTD/ALS
Sample Size: ~1,500 participants
Data Types: Genetic, clinical, neuroimaging, longitudinal
Accessibility: 4/5 (requires NIH application)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★★ |
| Accessibility | ★★★★☆ |
| Sample Size | ★★★★☆ |
| Data Richness | ★★★★★ |
Description: The ARTFL-LEFFTDS consortium represents the US counterpart to GENFI, focusing on the longitudinal characterization of individuals with FTD and ALS. The dataset includes detailed motor and cognitive assessments, genetic screening, and neuroimaging.
Key Publications:
Access: LEFFTDS Information
Path: PD/MBS cohort with FTD markers
Sample Size: ~200 FTD-spectrum participants
Data Types: Clinical, neuroimaging, biomarker, genetic
Accessibility: 5/5 (open access)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★☆ |
| Accessibility | ★★★★★ |
| Sample Size | ★★★☆☆ |
| Data Richness | ★★★★☆ |
Description: While primarily a Parkinson's disease study, PPMI includes participants with Dementia with Lewy Bodies (DLB) and provides open-access longitudinal data valuable for comparative FTD research.
Access: PPMI Database
Path: Brain tissue repository
Sample Size: ~500+ FTD cases
Data Types: Postmortem brain tissue, neuropathology, genetics
Accessibility: 3/5 (material transfer agreement)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★★ |
| Accessibility | ★★★☆☆ |
| Sample Size | ★★★★☆ |
| Data Richness | ★★★★★ |
Description: The Mayo Clinic Brain Bank contains one of the world's largest collections of FTD brain tissue, including cases with FTLD-tau, FTLD-TDP, and FTLD-FUS pathologies. Essential for neuropathological research.
Key Publications:
Path: Clinical FTD research
Sample Size: ~800 active participants
Data Types: Clinical, neuroimaging, genetic, CSF
Accessibility: 4/5 (collaboration required)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★☆ |
| Accessibility | ★★★★☆ |
| Sample Size | ★★★★☆ |
| Data Richness | ★★★★☆ |
Description: UCSF's Memory and Aging Center operates one of the largest clinical FTD programs, with comprehensive longitudinal data and strong research infrastructure.
Key Publications:
Path: FTD neuroimaging
Sample Size: ~300 participants
Data Types: MRI, PET, clinical
Accessibility: 4/5 (data request)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★☆ |
| Accessibility | ★★★★☆ |
| Sample Size | ★★★☆☆ |
| Data Richness | ★★★★☆ |
Description: Focused specifically on neuroimaging biomarkers in FTD, FTLDNI provides standardized MRI and PET data essential for imaging biomarker research.
Path: Patient-derived cell lines
Cell Lines: 100+ lines
Data Types: Stem cells, neurons, omics
Accessibility: 3/5 (cell line request)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★☆ |
| Accessibility | ★★★☆☆ |
| Sample Size | ★★★☆☆ |
| Data Richness | ★★★★★ |
Description: Multiple consortia have generated iPSC lines from FTD patients with C9orf72, MAPT, and GRN mutations. Critical for disease modeling and therapeutic screening.
Key Resources:
Path: UK brain tissue
Sample Size: ~150 FTD cases
Data Types: Brain tissue, neuropathology
Accessibility: 3/5 (MTA required)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★★☆ |
| Accessibility | ★★★☆☆ |
| Sample Size | ★★★☆☆ |
| Data Richness | ★★★★☆ |
Path: Multi-site brain bank consortium
Sample Size: ~300 cases across sites
Data Types: Brain tissue, genetics
Accessibility: 3/5
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★☆☆ |
| Accessibility | ★★★☆☆ |
| Sample Size | ★★★☆☆ |
| Data Richness | ★★★☆☆ |
Path: Fluid biomarker datasets
Sample Size: Varies by study
Data Types: CSF, blood biomarkers
Accessibility: 4/5 (most are open)
| Dimension | Score |
|---|---|
| Scientific Impact | ★★★☆☆ |
| Accessibility | ★★★★☆ |
| Sample Size | ★★★☆☆ |
| Data Richness | ★★★☆☆ |
| Dataset | Impact | Access | Size | Richness | Overall |
|---|---|---|---|---|---|
| GENFI | ★★★★★ | ★★★★☆ | ★★★★★ | ★★★★★ | 4.6 |
| ARTFL-LEFFTDS | ★★★★★ | ★★★★☆ | ★★★★☆ | ★★★★★ | 4.5 |
| Mayo Brain Bank | ★★★★★ | ★★★☆☆ | ★★★★☆ | ★★★★★ | 4.3 |
| UCSF FTD | ★★★★☆ | ★★★★☆ | ★★★★☆ | ★★★★☆ | 4.0 |
| PPMI (FTD) | ★★★★☆ | ★★★★★ | ★★★☆☆ | ★★★★☆ | 3.9 |
| FTLDNI | ★★★★☆ | ★★★★☆ | ★★★☆☆ | ★★★★☆ | 3.8 |
| iPSC Lines | ★★★★☆ | ★★★☆☆ | ★★★☆☆ | ★★★★★ | 3.7 |
| Cambridge BB | ★★★★☆ | ★★★☆☆ | ★★★☆☆ | ★★★★☆ | 3.5 |