Proposed minimum information guideline for kidney disease—research and clinical data reporting: a cross-sectional study
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Date Uploaded:
26 November 2022
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Objective This project aimed to develop and propose
a standardised reporting guideline for kidney disease
research and clinical data reporting, in order to improve
kidney disease data quality and integrity, and combat
challenges associated with the management and
challenges of ‘Big Data’.
Methods A list of recommendations was proposed for
the reporting guideline based on the systematic review
and consolidation of previously published data collection
and reporting standards, including PhenX measures and
Minimal Information about a Proteomics Experiment (MIAPE).
Thereafter, these recommendations were reviewed by domainspecialists using an online survey, developed in Research
Electronic Data Capture (REDCap). Following interpretation
and consolidation of the survey results, the recommendations
were mapped to existing ontologies using Zooma, Ontology
Lookup Service and the Bioportal search engine. Additionally,
an associated eXtensible Markup Language schema was
created for the REDCap implementation to increase user
friendliness and adoption.
Results The online survey was completed by 53
respondents; the majority of respondents were dual clinicianresearchers (57%), based in Australia (35%), Africa (33%)
and North America (22%). Data elements within the reporting
standard were identified as participant-level, study-level and
experiment-level information, further subdivided into essential
or optional information.
Conclusion The reporting guideline is readily employable
for kidney disease research projects, and also adaptable for
clinical utility. The adoption of the reporting guideline in kidney
disease research can increase data quality and the value
for long-term preservation, ensuring researchers gain the
maximum benefit from their collected and generated data.