The Longitudinal Pediatric Data Resource: Facilitating Longitudinal Collection of Health Information to Inform Clinical Care and Guide Newborn Screening Efforts is a dataset published in International Journal of Neonatal Screening (2021). On theSindex it has a DataRank of 0.805, placing it in the top 25% of the data-sharing corpus. It has been cited 20 times, with 12 citing works in its 1-hop citation network. Its calibrated FAIR score is 42/100.
Ranks in the top 25% 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://nbstrn.org/tools/lpdr”
The paper gives a web URL for the data, not a persistent identifier scheme (DOI, Handle, ARK, URN, or repository accession).
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'
“The LPDR is accessible through the NBSTRN website at nbstrn.org”
The data holder is the NBSTRN website, which is not a dedicated repository from the class-1 list.
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
“The data presented in this study are openly available in https://nbstrn.org/tools/lpdr (accessed on 29 June 2021).”
The dataset identifier appears only in the body text of the Data Availability Statement, not in the 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
“The data presented in this study are openly available in https://nbstrn.org/tools/lpdr (accessed on 29 June 2021).”
The statement points to a website URL, not a repository record, so it is class 2 (partial).
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 LPDR contains 24,172 core and disease specific CDEs for 118 rare genetic diseases”
The dataset content is described in running prose, not in an itemised inventory (section, table, or list).
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'
“Data stored in the LPDR is available to the research and NBS community, and the use of de-identified, case-level data requires registration as an NBSTRN user.”
The paper states a precondition of registration for accessing de-identified data, which is a defined followable process. [majority verdict 'partial' (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
“openly available”
The paper uses the natural-language equivalent 'openly available' to label the access level of the data.
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
“the use of de-identified, case-level data requires registration as an NBSTRN user”
The paper names an institutional gatekeeper (registration + Data Sharing Agreement) for accessing the sensitive newborn data.
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 data presented in this study are openly available in https://nbstrn.org/tools/lpdr (accessed on 29 June 2021).”
The statement indicates availability at the time of access but makes no commitment to persistence. [majority verdict 'partial' (4/5 passes agreed)]
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'
“CDE sets are organized into REDCap formatted data dictionaries and text files.”
The paper states that data are provided in text files, which is an open, non-proprietary format. [majority verdict 'yes' (3/5 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
“annotated with Logical Observation Identifiers Names and Codes (LOINC), Systematized Nomenclature of Medicine–Clinical Terms (SNOMED CT), and the International Classification of Diseases, Ninth or Tenth Revision (ICD-9 or 10) codes.”— not found in the paper; verdict downgraded
The paper names LOINC, SNOMED CT, and ICD-9/10 codes, which are standard controlled vocabularies applied to the data. [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (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'
No identifier (accession, DOI, RRID, etc.) is given for any external resource that the study's data depend on or derive from. [majority verdict 'no' (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 license or reuse terms are stated for the data; the article's CC BY license applies to the paper, not the data. [majority verdict 'no' (4/5 passes agreed)]
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'
Neither a version token nor a snapshot date is provided for the data. [majority verdict 'no' (3/5 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 location is provided; the study's own code is not addressed.
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)
“HHSN275201800005C”
The paper provides a specific contract number (award identifier) for the funding. [majority verdict 'yes' (3/5 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
“Most research projects use REDCap for data collection and formats the CDEs into dropdown menus using REDCap”
The paper names REDCap, a specific software tool used to produce the data. [majority verdict 'yes' (3/5 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
“The LPDR provides data dictionaries to create electronic data entry forms”
The paper names a data dictionary as a documentation object that accompanies the data.
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
0.457
From this paper's citation signal
Citation Network Contribution
0.348
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 12 citers.
Eunice Kennedy Shriver National Institute of Child Health and Human Development
Grant: HHSN275201800005C
Influential Citations
2
Fields of Study
Keywords