Clinical Outcomes in the Nephrotic Syndrome Study Network: Disease Burden and Treatment Patterns over Time is a dataset published in Glomerular Diseases (2025). On theSindex it has a DataRank of 0.165, placing it in the top 70.2% of the data-sharing corpus. It has been cited 2 times, with 2 citing works in its 1-hop citation network. Its calibrated FAIR score is 33/100.
Ranks in the top 70% 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.
“www.neptune-study.org”
The only identifier for the data is a web address, which is not a persistent identifier scheme (DOI, Handle, ARK, URN, or repository accession). [majority verdict 'partial' (3/5 passes agreed)]
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'
“NEPTUNE Data and Analysis Coordinating Center (DACC)”
The named host is a project website, not a curated repository listed in re3data or FAIRsharing. [majority verdict 'partial' (3/5 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
“The dataset may be requested from the NEPTUNE Data and Analysis Coordinating Center (DACC), www.neptune-study.org .”
The dataset's identifier (URL) appears only in the body text, not in the reference list. [majority verdict 'partial' (4/5 passes agreed)]
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 in this study were obtained from the Nephrotic Syndrome Study Network (NEPTUNE) where data sharing requires ancillary study approval and a data use agreement. The dataset may be requested from the NEPTUNE Data and Analysis Coordinating Center (DACC), www.neptune-study.org .”
The statement points to a request process (Colavizza category 1), not to a repository record. [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
“We included participants who underwent their first clinically indicated kidney biopsy demonstrating minimal change disease (MCD), focal segmental glomerulosclerosis (FSGS), or membranous nephropathy (MN). We described demographic and clinical characteristics at the time of biopsy and baseline visits.”
The dataset is described in running prose, not in an itemised inventory (section, table, or list of files). [majority verdict 'partial' (4/5 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'
“The data in this study were obtained from the Nephrotic Syndrome Study Network (NEPTUNE) where data sharing requires ancillary study approval and a data use agreement.”
The access route carries a precondition (approval and DUA), so it is not unconditional. [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
“The dataset may be requested from the NEPTUNE Data and Analysis Coordinating Center (DACC) where data sharing requires ancillary study approval and a data use agreement.”— not found in the paper; verdict downgraded
The paper describes the access process but does not label the access level with a standard vocabulary term. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (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
“The dataset may be requested from the NEPTUNE Data and Analysis Coordinating Center (DACC) where data sharing requires ancillary study approval and a data use agreement.”— not found in the paper; verdict downgraded
The gatekeeper is an institutional body (DACC) with a defined process, not a natural person. [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (3/5 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
The paper does not state when the data become available or how long they persist. [majority verdict 'no' (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'
No file format (open or proprietary) 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
No data or metadata community standard (e.g., MIAME, MINSEQE, FAIRsharing-registered) is named for 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'
“NCT01209000”
The paper gives the clinical trial registration number (NCT01209000) for the NEPTUNE study, which is an identifier for a resource other than the paper's own dataset. [majority verdict 'yes' (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'
No licence or reuse terms are stated for the data; the article's CC BY-NC licence does not apply to the data. [majority verdict 'no' (3/5 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'
No version token or date is given for the dataset snapshot used in the analysis.
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 is mentioned; the paper only names the software used (SAS, R) without providing a locator for the study's own code.
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)
“U54DK083912”
Award numbers are provided for the funding sources.
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
“Procedures performed during study visits include laboratory studies, blood and urine collection for inclusion in the biorepository, clinical examination, and administration of questionnaires.”
The description of data production is generic, without naming specific instruments, assays, or software versions used for generating the data. [majority verdict 'partial' (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
“Table 1. NEPTUNE participant characteristics at the initial study visit”
Variable definitions are provided in a table inside the article, not in a separate documentation object shipped with the data. [majority verdict 'partial' (3/5 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
0.165
From this paper's citation signal
Citation Network Contribution
0
From 0 citing papers with measurable signal
This paper's DataRank is currently driven only by its base citation score. None of the citing papers had measurable citation signal.
Learn more about DataRank methodology →National Institutes of Health
Grant: 5R01DK138395-03
Development and Validation of a Deep Learning system to estimate Interstitial Fibrosis from a kidney ultrasonography image
National Institutes of Health
Grant: 5U2CTR002818-03
Data Management and Coordinating Center: Rare Diseases Clinical Research Network
National Institutes of Health
Grant: 2U54DK083912-06
Nephrotic Syndrome Rare Disease Clinical Research Network
FWCI
1.55
Citation Percentile
0.8%
Citation Trend
Fields of Study
Keywords