The Add Health Parent Study: A Biosocial Resource for the Study of Multigenerational Racial/Ethnic Disparities in Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias is a dataset published in Journal of Alzheimer s Disease (2024). On theSindex it has a DataRank of 0, placing it in the top 100% of the data-sharing corpus. Its calibrated FAIR score is 21/100.
Ranks in the top 100% for downstream scientific impact
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.
No persistent identifier or accession number is given for the dataset described in this 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'
“Genomic data will be deposited to both the database of Genotypes and Phenotypes (dbGaP) and the National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site.”
The paper names dbGaP and NIAGADS as repositories for genomic data, both of which are listed in re3data/FAIRsharing. [majority verdict 'yes' (4/5 passes agreed)]
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 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
“Information on how to obtain data from Phase 1 of the Add Health Parent Study is available at https://www.cpc.unc.edu/research-themes/projects/add-health-parent-study-phase-i/ . Information on how to obtain the Add Health data is available on the Add Health website ( http://www.cpc.unc.edu/addhealth ).”
The data-availability statement points to a project website for Phase 1 and to Add Health, not to a repository record for the Phase 2 data described in this paper. [majority verdict 'partial' (3/5 passes agreed)]
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
“The AHPS data will be linked with rich longitudinal data on original Add Health participants to create and disseminate the first nationally representative multigenerational biosocial resource with cognitive, genomic, behavioral, and social data.”— not found in the paper; verdict downgraded
The paper describes the planned data in general prose but does not provide an itemised inventory of files, variables, or samples. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (2/5 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'
“Public-use data contains a random subset of the Add Health cohort and their parents in linked longitudinal files and will be available through data repositories.”
The paper states future availability through repositories but provides no specific, current route with no precondition; the data are not yet accessible. [majority verdict 'no' (3/5 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
“Public-use data contains a random subset of the Add Health cohort and their parents in linked longitudinal files and will be available through data repositories.”
The paper explicitly labels the access levels as 'public-use' and 'restricted-use'. [majority verdict 'yes' (3/5 passes agreed)]
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
“Genomic data will be deposited to both the database of Genotypes and Phenotypes (dbGaP) and the National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site.”
The paper names dbGaP and NIAGADS, which are controlled-access repositories serving as institutional gatekeepers for sensitive genomic data. [majority verdict 'yes' (4/5 passes agreed)]
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
No sentence in the paper states how long the data will remain available or makes any retention commitment.
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'
No file format is named for the released data.
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
The paper does not name a data or metadata community standard (e.g., MIAME, ISA-Tab, an ontology) that is applied to the data.
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'
The paper references other studies (e.g., Add Health, HRS) but does not provide an identifier (DOI, accession, RRID) for any of them. [majority verdict 'no' (4/5 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'
The paper applies a CC BY-NC 4.0 license to the article itself, but no license is stated 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 provided to identify a specific snapshot of the data. [majority verdict 'no' (4/5 passes agreed)]
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'
No code availability statement is provided; the paper does not mention any code written by the authors.
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)
“This research was funded by Grant R01AG084071 from the National Institute of Aging.”
The paper provides a specific grant number (R01AG084071) attached to a named funder (National Institute of Aging). [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
“Saliva collection will be conducted using the Oragene DNA kit following the protocol used successfully in Add Health Wave IV.”
The paper names a specific kit (Oragene DNA kit) and mentions whole-genome SNP arrays, providing proper nouns for data production methods. [majority verdict 'yes' (4/5 passes agreed)]
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 such as a README, data dictionary, or 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 →
NIA NIH HHS
Grant: R01 AG042794
NIA NIH HHS
Grant: R21 AG042663
NICHD NIH HHS
Grant: P01 HD031921
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