Pathogenic variants in the Longitudinal Early‐onset Alzheimer's Disease Study cohort is a dataset published in Alzheimer s & Dementia (2023). On theSindex it has a DataRank of 0.739, placing it in the top 27.2% of the data-sharing corpus. It has been cited 27 times, with 18 citing works in its 1-hop citation network. Its calibrated FAIR score is 17/100.
Ranks in the top 27% for downstream scientific impact
Linked data & code
DataRank reads this dataset's downstream impact straight off the citation graph — no black box, no proprietary weighting. How is this computed?
FAIR checklist signals are shown for context only and do not affect DataRank scoring.
Full FAIR picture · advisory
The headline score is computed from the scored criteria — the fact-shaped checks (a repository, an accession, a licence) that two independent models agree on. The advisory criteria below are real FAIR guidance but rest on judgment calls that models read differently, so they inform without moving the number.
“https://leads-study.medicine.iu.edu/”— not found in the paper; verdict downgraded
The paper provides a URL for the LEADS website, which is a project site and not a persistent identifier scheme. [downgraded to 'no' — no verifiable quote from the paper]
RDA-F1-01D — FAIR Data Maturity Model: 'Data is identified by a persistent identifier' (priorit · RDA-F1-02D — FAIR Data Maturity Model: 'Data is identified by a globally unique identifier' · FsF-F1-02D — F-UJI/FAIRsFAIR: 'Data is assigned a persistent identifier'
No repository is named as the holder of the data; the data are available by request from the LEADS study.
RDA-F4-01M — FAIR Data Maturity Model: metadata is offered so it can be harvested and indexed ( · NIH DMS Policy Element 4 (NOT-OD-21-014) — name the repository where data will be archived · NSTC Desirable Characteristics of Data Repositories (2022) — 'Long-Term Sustainability', 'Reten
No identifier for the study's own dataset appears in the body text or reference list.
FORCE11 Joint Declaration of Data Citation Principles (2014) — data should be cited as a first- · RDA-F3-01M — metadata clearly and explicitly includes the identifier of the data it describes · FsF-F3-01M — F-UJI: 'Metadata includes the identifier of the data it describes'
Advisory · not in the published score
“LEADS data are available by request; proposals will be reviewed by the LEADS Data Sharing Committee (see Apostolova et al., 2021 [3] for more information).”
The statement falls under Colavizza category 1 (data available on request).
Colavizza, Hrynaszkiewicz, Staden, Whitaker & McGillivray (2020), 'The citation advantage of li · Springer Nature research data policy — Data Availability Statements: standard statement templat · RDA-F3-01M — metadata clearly and explicitly includes the identifier of the data it describes
“LEADS amyloid positive (EOAD) or negative (EOnonAD) cases were whole exome sequenced (N=299).”
The dataset size is described in running prose without an itemised inventory of files or variables. [majority verdict 'partial' (3/5 passes agreed)]
RDA-F2-01M — 'Rich metadata is provided to allow discovery' (priority Essential) · FsF-F2-01M — F-UJI: 'Metadata includes descriptive core elements to support data findability' · FsF-R1-01MD — F-UJI: 'Metadata specifies the content of the data'
“LEADS data are available by request; proposals will be reviewed by the LEADS Data Sharing Committee”
Access requires a formal application and review by a committee, which is a specified followable process with a precondition. [majority verdict 'partial' (4/5 passes agreed)]
RDA-A1.1-01D — 'Data is accessible through a free access protocol' · FsF-A1-01M — F-UJI: 'Metadata contains access level and access conditions of the data' · NSTC Desirable Characteristics of Data Repositories (2022) — 'Free and Easy Access'
Advisory · not in the published score
“LEADS data are available by request; proposals will be reviewed by the LEADS Data Sharing Committee (see Apostolova et al., 2021 [3] for more information).”
The paper describes the access action (request and review) but does not apply an explicit access-level label from the standard vocabulary.
FsF-A1-01M — F-UJI: 'Metadata contains access level and access conditions of the data' · RDA-A1-01M — metadata contains information to enable the user to get access to the data · COAR Controlled Vocabularies — Access Rights v1.0 (open / embargoed / restricted / metadata-onl
“LEADS data are available by request; proposals will be reviewed by the LEADS Data Sharing Committee”
The LEADS Data Sharing Committee is an institutional gatekeeper, not a natural person.
NIH Genomic Data Sharing Policy (NOT-OD-14-124) — controlled-access via a Data Access Committee · RDA-A1.2-01D — 'Data is accessible through an access protocol that supports authentication and · NIH DMS Policy Element 5 (NOT-OD-21-014) — Access, Distribution, or Reuse Considerations (conse
The paper states data are available by request but does not specify when they become available or for how long they persist.
NIH DMS Plan Element 4 (NOT-OD-21-014) — Data Preservation, Access, and Associated Timelines · NSTC Desirable Characteristics (2022), Organizational Infrastructure: 'Retention Policy' · RDA-A2-01M — 'Metadata is guaranteed to remain available after data is no longer available'
“paired-end FastQ files were aligned to Genome Reference Consortium Human Build 38 (hg38) using the recommend pipeline for Sentieon’s proprietary BWA-MEM function”— not found in the paper; verdict downgraded
The paper names FastQ, BAM, gVCF, and VCF as open community-standard formats. [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (2/5 passes agreed)]
FsF-R1.3-02D — F-UJI: 'Data is available in a file format recommended by the target research co · RDA-R1.3-02D — data is expressed in a machine-understandable community standard · RDA-I1-01D — data uses a knowledge representation expressed in a standardised format
Advisory · not in the published score
No data or metadata community standard (ontology, checklist, schema) is named for the dataset. [majority verdict 'no' (4/5 passes agreed)]
RDA-R1.3-01M — 'Metadata complies with a community standard' (priority Essential) · RDA-R1.3-01D — 'Data complies with a community standard' · RDA-I2-01M — '(Meta)data use vocabularies that follow FAIR principles'
“https://www.loni.usc.edu/”
The paper provides a URL for the PPMI data repository, which is an external resource used in the study. [majority verdict 'yes' (3/5 passes agreed)]
RDA-I3-01M — '(meta)data include references to other (meta)data' · RDA-I3-03M — 'metadata includes qualified references to other metadata' · FsF-I3-01M — F-UJI: 'Metadata includes links between the data and its related entities'
No licence or terms document is named for the data.
RDA-R1.1-01M — 'Metadata includes information about the licence under which the data can be reu · RDA-R1.1-02M — 'Metadata refers to a standard reuse licence' · RDA-R1.1-03M — 'Metadata refers to a machine-understandable reuse licence'
No version token or date is given to identify a specific snapshot of the data.
DataCite Metadata Schema 4.6 — the 'Version' property · RDA-R1.2-01M — provenance information (which version was used is provenance) · NSTC Desirable Characteristics of Data Repositories (2022) — 'Provenance', 'Retention Policy'
The study's own code is not made available through any locator; only third-party tools are named.
NIH DMS Policy Element 2 (NOT-OD-21-014) — 'Related Tools, Software and/or Code' · FAIR4RS Principles v1.0 (Chue Hong et al., 2022; RDA/FORCE11/ReSA) — FAIR Principles for Resear · FORCE11 Software Citation Principles (Smith, Katz & Niemeyer, 2016, PeerJ CS 2:e86)
“R56AG057195”
The paper lists multiple NIH grant numbers and Alzheimer's Association award numbers. [majority verdict 'yes' (4/5 passes agreed)]
DataCite Metadata Schema 4.6 — 'FundingReference' property (funderName, funderIdentifier, award · Crossref Funder Registry — canonical funder identifiers for funding metadata · RDA-F2-01M — rich metadata provided to allow discovery (funding is part of the descriptive reco
Advisory · not in the published score
“Illumina NovaSeq 6000”
The paper names specific instruments and software used to produce the data.
RDA-R1.2-01M — 'Metadata includes provenance information according to community- specific standa · FsF-R1.2-01M — F-UJI: 'Metadata includes provenance information about data creation or generati · W3C PROV-O (W3C Recommendation, 2013) — the entity/activity/agent model of provenance
No documentation object (README, codebook) is mentioned as accompanying the data. [majority verdict 'no' (4/5 passes agreed)]
RDA-R1-01M — '(Meta)data are richly described with a plurality of accurate and relevant attribu · FsF-R1-01MD — F-UJI: 'Metadata specifies the content of the data' · NIH DMS Policy Element 3 (NOT-OD-21-014) — Standards (documentation and metadata to accompany t
Calibrated FAIR score — a parallel quality metric, independent of the DataRank citation score. See the full evaluation →
Base Score Contribution
0.500
From this paper's citation signal
Citation Network Contribution
0.239
From 10 citing papers with measurable signal
Ranked by each citer's contribution to N(p) — log1p(Cq) divided by its reference count — out of 18 citers.
National Institutes of Health
Grant: R56AG057195
National Institutes of Health
Grant: U01AG057195
National Institutes of Health
Grant: U24AG021886
National Institutes of Health
Grant: U01AG016976
National Institutes of Health
Grant: P30AG010133
National Institutes of Health
Grant: P50AG008702
National Institutes of Health
Grant: P50AG025688
National Institutes of Health
Grant: P50AG005146
National Institutes of Health
Grant: P30AG062421
National Institutes of Health
Grant: P30AG062422
National Institutes of Health
Grant: P50AG023501
National Institutes of Health
Grant: P30AG010124
National Institutes of Health
Grant: P30AG066506
National Institutes of Health
Grant: P30AG013854
National Institutes of Health
Grant: P50AG005681
National Institutes of Health
Grant: P50AG047366
Alzheimer's Association
Grant: LEADS GENETICS‐19‐639372
Alzheimer's Association
Grant: AARG‐22‐926940
Alzheimer's Association
Grant: LDRFP‐21‐818464
NIA NIH HHS
Grant: P30 AG072980
NIA NIH HHS
Grant: P30 AG066515
NIA NIH HHS
Grant: K23 AG064029
Alzheimer's Association
Grant: LDRFP-21-818464
Alzheimer's Association
Grant: LEADS GENETICS-19-639372
NIA NIH HHS
Grant: U24 AG072122
NIA NIH HHS
Grant: P30 AG066462
NIA NIH HHS
Grant: P30 AG066444
Alzheimer's Association
Grant: AARG-22-926940
NIA NIH HHS
Grant: P30 AG072979
NIA NIH HHS
Grant: U19 AG032438
NIA NIH HHS
Grant: P30 AG066530
NIA NIH HHS
Grant: P30 AG072976
NIA NIH HHS
Grant: P30 AG072977
Michael J. Fox Foundation for Parkinson's Research
FWCI
3.82
Citation Percentile
0.9%
Citation Trend
Fields of Study
MeSH Terms
Keywords