Proposed minimum information guideline for kidney disease—research and clinical data reporting: a cross-sectional study

Abstract

ObjectiveThis 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’.MethodsA 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 domain-specialists 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.ResultsThe online survey was completed by 53 respondents; the majority of respondents were dual clinician-researchers (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.ConclusionThe 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.

Developing Clinical Phenotype Data Collection Standards for Research in Africa

“…Regarding the assessment of the validity of data collection kits, we had limited opportunity to measure the validity of the domain-specific kits in practice within the scope of H3Africa, given the time of development and final release of these kits. To counter this, we sought to assess and ensure the validity of the kits in other ways; therefore, we encouraged collaboration and worked alongside field experts to develop each of the kits, including, as previously illustrated, the Kidney Disease and Stroke kits [ 15 , 16 ]. We also sought additional external feedback on the elements and data collection protocols included in the kits by surveying field experts.…”

“…In total, the data collection kits were reviewed by 45 individuals (experts) through a survey, with the majority of respondents coming from South Africa (16), Tunisia (5), and Nigeria (4). In addition, the majority of respondents were classifed as non-H3Africa experts (17), while most of the H3Africa respondents were associated with the Phenotype Harmonisation (15), Cardiovascular Disease, and Rare Diseases H3Africa WGs. Te majority of respondents identifed themselves as experts in rare and developmental disorders (13), infectious diseases (13), and family history (12).…”

“…The PHWG aimed to build a core set of phenotypes to be collected within the consortium and develop protocols to facilitate the collection of these phenotypes. This work was later expanded to cover specific research or disease domains, which were represented in clusters across the consortium [ 15 , 16 ]. Here we describe the development and dissemination of standard phenotype data collection kits for genomics research, which are adapted to ensure their suitability for use in African settings.…”