FTD Dataset Rankings

Overview

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.

Ranking Methodology

Each dataset is scored on a 1-5 scale across four dimensions:

• Scientific Impact: Publications citing the dataset, breakthrough discoveries enabled
• Accessibility: Ease of data access, application requirements, wait times
• Sample Size: Number of participants, specimens, or cell lines available
• Data Richness: Types of data available (genomic, imaging, clinical, biomarker)

Tier 1: Highest Impact Datasets

1. GENFI (Genetic Frontotemporal Dementia Initiative)

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 | ★★★★★ |

Overview

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.

Ranking Methodology

Each dataset is scored on a 1-5 scale across four dimensions:

• Scientific Impact: Publications citing the dataset, breakthrough discoveries enabled
• Accessibility: Ease of data access, application requirements, wait times
• Sample Size: Number of participants, specimens, or cell lines available
• Data Richness: Types of data available (genomic, imaging, clinical, biomarker)

Tier 1: Highest Impact Datasets

1. GENFI (Genetic Frontotemporal Dementia Initiative)

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](/entities/c9orf72), [MAPT](/proteins/tau), 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:

• [Rohrer et al., GENFI: A decade of genetic FTD research (2023)](https://doi.org/10.1093/brain/awad276)

2. ARTFL-LEFFTDS (ALS/FTD Longitudinal Study)

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:

• [Staffaroni et al., ARTFL-LEFFTDS Consortium (2022)](https://doi.org/10.1212/WNL.0000000000200923)

Tier 2: High-Quality Datasets

3. PPMI (Parkinson's Progression Markers Initiative) - FTD Subset

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](https://www.ppmi-info.org/)

4. Mayo Clinic Brain Bank - FTD Collection

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:

• [Dickson et al., Mayo Clinic Brain Bank Neuropathology (2022)](https://doi.org/10.1007/s00401-022-02400-5)

5. University of California, San Francisco (UCSF) FTD Cohort

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:

• [Rankin et al., UCSF FTD Cohort Studies](https://doi.org/10.1212/WNL.00000000000115)

Tier 3: Specialized Datasets

6. FTLDNI (FTLD Neuroimaging Initiative)

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.

7. iPSC FTD Consortia

Path: Patient-derived cell lines Cell Lines: 100+ lines Data Types: Stem cells, [neurons](/entities/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:

• [Coriell Institute FTD iPSC Collection](https://catalog.coriell.org/)
• [WiCell FTD Lines](https://www.wicell.org/)

8. Cambridge Brain Bank - FTD Collection

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 | ★★★★☆ |

Tier 4: Emerging Resources

9. European Brain Bank - FTD

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 | ★★★☆☆ |

10. Biomarker Consortia (CSF, Blood)

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 | ★★★☆☆ |

Summary Matrix

| 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 |

• [Dementia with Lewy Bodies](/diseases/dementia-with-lewy-bodies)
• [Progressive Supranuclear Palsy](/diseases/steele-richardson-olszewski-syndrome)
• [C9orf72 Gene](/genes/c9orf72)
• [MAPT Gene](/genes/mapt)
• [GRN Gene](/genes/grn)
• [TDP-43 Protein](/proteins/tardbp-protein)
• [Tau Protein](/proteins/tau)
• [Frontotemporal Lobar Degeneration Mechanisms](/mechanisms/frontotemporal-lobar-degeneration)
• [--](/proteins/n--cadherin-protein)
• [Alzheimer's Disease](/diseases/alzheimers-disease)
• [Parkinson's Disease](/diseases/parkinsons-disease)

External Links

• [PubMed](https://pubmed.ncbi.nlm.nih.gov/)
• [KEGG Pathways](https://www.genome.jp/kegg/pathway.html)

References