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Table 2 Framework used to guide the choice and definitions for data elements included in our clinical data collection tool

From: Evaluation of the quality of clinical data collection for a pan-Canadian cohort of children affected by inherited metabolic diseases: lessons learned from the Canadian Inherited Metabolic Diseases Research Network

 DemographicsDiagnosisClinical descriptorsSecondary diagnosesInterventionsCovariatesOutcomes
DescriptionGeneral patient informationDefinition should be broad to reflect clinical heterogeneity and be as inclusive as possible of individuals with possible health issues related to this IMDVariables informing diagnosis, tissue involvement, severity, and pathophysiology related to primary diagnosis and/or other acute/chronic diagnosesDiagnoses resulting from complications of the primary diagnosis or related interventions, as well as apparently unrelated acute or chronic diagnosesExposures that are manipulated by care providers to change natural historyOther factors postulated to influence the outcome(s)/natural historyVariables reflecting the health and functional status of the patient, including patient/family-centred variables