Harmonizing data on correlates of sleep in children within and across neurodevelopmental disorders: lessons learned from an Ontario Brain Institute cross-program collaboration

There is an increasing desire to study neurodevelopmental disorders (NDDs) together to understand commonalities to develop generic health promotion strategies and improve clinical treatment. Common data elements (CDEs) collected across studies involving children with NDDs afford an opportunity to answer clinically meaningful questions. We undertook a retrospective, secondary analysis of data pertaining to sleep in children with different NDDs collected through various research studies. The objective of this paper is to share lessons learned for data management, collation, and harmonization from a sleep study in children within and across NDDs from large, collaborative research networks in the Ontario Brain Institute (OBI). Three collaborative research networks contributed demographic data and data pertaining to sleep, internalizing symptoms, health-related quality of life, and severity of disorder for children with six different NDDs: autism spectrum disorder; attention deficit/hyperactivity disorder; obsessive compulsive disorder; intellectual disability; cerebral palsy; and epilepsy. Procedures for data harmonization, derivations, and merging were shared and examples pertaining to severity of disorder and sleep disturbances were described in detail. Important lessons emerged from data harmonizing procedures: prioritizing the collection of CDEs to ensure data completeness; ensuring unprocessed data are uploaded for harmonization in order to facilitate timely analytic procedures; the value of maintaining variable naming that is consistent with data dictionaries at time of project validation; and the value of regular meetings with the research networks to discuss and overcome challenges with data harmonization. Buy-in from all research networks involved at study inception and oversight from a centralized infrastructure (OBI) identified the importance of collaboration to collect CDEs and facilitate data harmonization to improve outcomes for children with NDDs

Table_1_Sleep, internalizing symptoms, and health-related quality of life in children with neurodevelopmental disorders: a cross-sectional analysis of cohort data from three research programs in Canada.docx

ObjectiveThe objectives of this study were to determine rates of sleep disturbances in children with neurodevelopmental disorders (NDDs) within and across disorders and compared to typically developing (TD) children and to describe differences above and below the clinical cut-off for sleep disturbances. In addition, we explored the associations between demographic variables, severity of disorder, sleep disturbances, internalizing symptoms, and health-related quality of life (HRQOL) in children with NDDs.MethodWe conducted cross-sectional data analyses of an existing database with community-dwelling children with NDDs (n = 1438) and TD children (n = 140) aged 4–12 years. Parent-reported measures on sleep disturbances using the Children's Sleep Habits Questionnaire (CSHQ), internalizing symptoms using the Revised Children's Anxiety and Depression Scale, and HRQOL using the KINDL-R were assessed. Hierarchical linear regression examined the associations between demographic variables, severity of disorder, sleep disturbances, internalizing symptoms, and HRQOL in children with NDDs.ResultsChildren with NDDs (8.5 ± 2.1 years, 69.9% M) had significantly greater total sleep disturbance index (TSDI) than TD children [(8.6 ± 2.3 years, 60.0% M) (mean difference = 6.88 [95% CI 5.37, 8.40]; p ConclusionSurveillance and management of sleep and internalizing symptoms are needed to improve HRQOL in children with NDDs. Commonalities in sleep disturbances for children with NDDs support transdiagnostic interventions to treat sleep.</p