Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder is a dataset published in Brain and Behavior (2025). On theSindex it has a DataRank of 0, placing it in the top 100% of the data-sharing corpus. Its calibrated FAIR score is 4/100.
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 string (DOI, Handle, ARK, URN, or repository accession) is given for the dataset; the data are stated to be available on request without a PID.
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 data that support the findings of this study are not openly available but are available upon reasonable request from the corresponding author subject to IRB and governance approvals.”
No repository is named as the holder of the data; the data are available from the corresponding author, which is not a repository.
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 anywhere in the paper, either in the body or 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 that support the findings of this study are not openly available but are available upon reasonable request from the corresponding author subject to IRB and governance approvals.”
The statement points to the corresponding author on request (Colavizza category 1), which is not a repository record.
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
“Table 1. Characteristics of participants and scores on observed variables (N = 206).”— not found in the paper; verdict downgraded
The paper includes a structural table (Table 1) that lists the variables and their summary statistics, providing an itemised inventory of the dataset. [downgraded to 'partial' — no verifiable quote from the paper] [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 that support the findings of this study are not openly available but are available upon reasonable request from the corresponding author subject to IRB and governance approvals.”
The only route is a discretionary request to a person, which is not a followable access process and scores 'no'. [majority verdict 'no' (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 data that support the findings of this study are not openly available but are available upon reasonable request from the corresponding author subject to IRB and governance approvals.”
The paper describes the access action ('available upon reasonable request') without using an explicit access-level label from the standard vocabulary. [majority verdict 'partial' (4/5 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 data that support the findings of this study are not openly available but are available upon reasonable request from the corresponding author subject to IRB and governance approvals.”
The gatekeeper is a natural person (the corresponding author), not an institutional committee or repository. [majority verdict 'partial' (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 when the data become available or how long they persist; the data availability statement only mentions availability upon request without timing.
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 for the released data is named in the text; the data are not openly deposited and no format is specified.
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 from FAIRsharing (e.g., MIAME, ISA-Tab, OBO ontology) is named in the paper; the assessments used are clinical outcome measures, not metadata standards.
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'
“International CDKL5 Clinical Research Network (ICCRN, NCT05558371)”— not found in the paper; verdict downgraded
The paper gives the clinical trial registry identifier NCT05558371 for the study network, which is an external resource identifier. [downgraded to 'no' — no verifiable quote from the paper]
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 is attached to the data; the paper's CC BY 4.0 licence applies to the article only, not 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'
“Families who attended a US COE ... between January 2021 and February 2023 were invited to participate.”— not found in the paper; verdict downgraded
The paper gives a data collection period (January 2021 to February 2023) that serves as a data cut-off date, but no version token is provided. [downgraded to 'no' — no verifiable quote from the paper]
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 appears in the paper; the statistical code used is not mentioned or deposited.
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 study was supported by NIH‐NINDS U01NS114312 and the International Foundation for CDKL5 Research. TB is supported by the Children's Hospital of Colorado Foundation Ponzio Family Chair in Neurology Research. JD is supported by the Stan Perron Charitable Foundation. HEO is supported by 5K23NS107646‐05, 3K23NS107646‐05S1.”
The paper lists specific grant numbers (e.g., U01NS114312, 5K23NS107646) attached to named funders.
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
“Families who attended a US COE ... between January 2021 and February 2023 were invited to participate in a clinic evaluation and to complete parent‐reported questionnaires to describe their child's epilepsy, other comorbidities, communication, and quality of life.”— not found in the paper; verdict downgraded
Data collection is described in generic terms without naming specific instruments, kits, or software versions for data production. [downgraded to 'no' — no verifiable quote from the paper] [majority verdict 'no' (2/5 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. Characteristics of participants and scores on observed variables (N = 206).”— not found in the paper; verdict downgraded
Variable definitions are provided inside the article via Table 1, but no separate documentation object (README, codebook) is said to accompany the data. [downgraded to 'no' — no verifiable quote from the paper] [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 →
National Institute of Neurological Disorders and Stroke
Grant: 3K23NS107646‐05S1
National Institute of Neurological Disorders and Stroke
Grant: 5K23NS107646
National Institute of Neurological Disorders and Stroke
Grant: U01NS114312
NINDS NIH HHS
Grant: 3K23NS107646-05S1
Stan Perron Charitable Foundation
Children's Hospital of Colorado Foundation, Ponzio Family Chair in Neurology Research
FWCI
0.00
Citation Percentile
0.3%
Fields of Study
MeSH Terms
Keywords