Table 2.

Highlighted findings for core outcomes according to each data quality concept

Emergency department use	Completeness: Presence or absence and number of emergency department visits since the last clinic visit was reported at 95% of clinic visits Conformance: Exact dates of emergency department visits were not always reported, but the age at the visit could often be inferred if it occurred between two clinic visits at known ages Plausibility: Although exhibiting similar trends by age, observed rates are underestimated when compared to a previously published study in Ontario using health care administrative data. Only 42% of expected visits were recorded in the chart
Fasting times	Completeness: Recommended fasting times were updated during approximately 39% of visits. Clinic-specific fasting protocols were provided by some centres, leading to a lack of patient-specific reporting in the chart Conformance: Fasting prescriptions were frequently reported as a range of time, based on the presence/absence of other interventions, or based on specific times of day Plausibility: Median fasting times that were explicitly recorded in this sample followed published recommendations by age
Metabolic decompensation	Completeness: Results of monitoring tests that were expected to be ordered were frequently missing and variation was noted in the level of detail recorded or abstracted Conformance: Episodes were ascertained mainly based on their associated manifestations and rarely directly reported Plausibility: Median age at decompensation roughly followed known ages during which children with MCAD deficiency commonly exhibit symptoms
Death	Fortunately, death occurred extremely rarely in this cohort. Therefore, data quality for this outcome was not able to be evaluated