CoMeCT recommendations for the adoption of health research data standards by European emerging infectious disease-focussed cohorts and trials: a summary of findings from a cross-sectional survey

Health research data standards are crucial for ensuring data consistency, enabling collaboration, and accelerating discoveries, especially in the research response to emerging pathogens like COVID-19 or Monkey Pox. This study surveyed European funded, emerging infectious disease-focused clinical trials and cohort consortia to understand their use of and challenges with health data standards. Findings revealed that, while some groups use data standards like International Classification of Diseases (ICD) and Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT), many researchers face barriers to implementing standards including lack of expertise, unclear benefits, and insufficient funding. Trial and cohort consortia recommended providing more training, mandating standards use and offering clear guidelines for researchers as pathways for European funders to improve standards uptake in the health research space. Implementing these steps can help make health research data more accessible and reusable, improving the research response to emerging pathogens.