RESUMO
OBJECTIVE: Norwegian health registries covering entire population are used for administration, research, and emergency preparedness. We harmonized these data onto the Observational Medical Outcomes Partnership common data model (OMOP CDM) and enrich real-world data in OMOP format with COVID-19 related data. METHODS: Data from six registries (2018-2021) covering birth registrations, selected primary and secondary care events, vaccinations, and communicable disease notifications were mapped onto the OMOP CDM v5.3. An Extract-Transform-Load (ETL) pipeline was developed on simulated data using data characterization documents and scanning tools. We ran dashboard quality checks, cohort generations, investigated differences between source and mapped data, and refined the ETL accordingly. RESULTS: We mapped 1.5 billion rows of data of 5,673,845 individuals. Among these, there were 804,277 pregnancies, 483,585 mothers together with 792,477 children, and 472,948 fathers. We identified 382,516 positive tests for COVID-19 in 380,794 patients. These figures are consistent with results from source data. In addition to 11 million source codes mapped automatically, we mapped 237 non-standard codes to standard concepts and introduced 38 custom concepts to accommodate pregnancy-related terminologies that were not supported by OMOP CDM vocabularies. A total of 3,700/3,705 (99.8%) checks passed. The 5 failed checks could be explained by the nature of the data and only represent a small number of records. DISCUSSION AND CONCLUSION: Norwegian registry data were successfully harmonized onto OMOP CDM with high level of concordance and provides valuable source for federated COVID-19 related research. Our mapping experience is highly valuable for data partners with Nordic health registries.
RESUMO
In the statistical literature, the class of survival analysis models known as cure models has received much attention in recent years. Cure models seem not, however, to be part of the statistical toolbox of perinatal epidemiologists. In this paper, we demonstrate that in perinatal epidemiological studies where one investigates the relation between a gestational exposure and a condition that can only be ascertained after several years, cure models may provide the correct statistical framework. The reason for this is that the hypotheses being tested often concern an unobservable outcome that, in view of the hypothesis, should be thought of as occurring at birth, even though it is only detectable much later in life. The outcome of interest can therefore be viewed as a censored binary variable. We illustrate our argument with a simple cure model analysis of the possible relation between gestational exposure to paracetamol and attention-deficit hyperactivity disorder, using data from the Norwegian Mother, Father and Child Cohort Study conducted by the Norwegian Institute of Public Health, and information about the attention-deficit hyperactivity disorder diagnoses obtained from the Norwegian Patient Registry.