Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.

Purpose: Although participating in research is often presented as something that can 'help others in the future', research participants may also benefit from accessing and understanding their own research data. However, participant attitudes toward receiving individual data via research reports are under researched. This study examined participant perceptions of research reports within the context of the pilot phase of the Pediatric Autism Research Cohort (PARC) Study.

Exploring the association between individual, family, and program characteristics and change in health outcomes 12 months after enrollment into the CANadian Pediatric Weight management Registry (CANPWR).

Objectives: To examine individual, family, and program characteristics associated with changes in anthropometric and cardiometabolic health indicators in children with overweight or obesity after participating in multidisciplinary obesity management for 12 months.

Methods: Participants included children 2-17 years old with overweight or obesity enrolled in the CANadian Pediatric Weight Management Registry (CANPWR). Multiple linear regression analyses were conducted to investigate the associations between individual, family, and program characteristics and changes in anthropometry (WHO BMI z-score) and cardiometabolic health indicators (systolic and diastolic blood pressure; fasting and 2-h glucose post-oral glucose tolerance test (OGTT); high density lipoprotein- (HDL) and non-HDL cholesterol and fasting triglycerides).

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 Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

Introduction: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the (.

Functional difficulties in children and youth with autism spectrum disorder: analysis of the 2019 Canadian Health Survey on Children and Youth.

Introduction: This study examined the prevalence of functional difficulties and associated factors in Canadian children/youth aged 5 to 17 years diagnosed with autism spectrum disorder (ASD).

Methods: We analyzed data from the 2019 Canadian Health Survey on Children and Youth (CHSCY), a nationally representative survey of Canadian children/youth that used the Washington Group Short Set on Functioning (WG-SS) to evaluate functioning in six daily tasks. For each functional domain, binary outcomes were derived (no/some difficulty, a lot of difficulty/no ability).

Establishing and sustaining authentic organizational partnerships in childhood disability research: lessons learned.

There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre (CanChild), and to identify and share key ingredients for developing partnerships between organizations and academic institutions.

24-hour movement guideline adherence and mental health: A cross-sectional study of emerging adults with chronic health conditions and disabilities.

Background: Recent work has shown that individuals with chronic health conditions and disabilities (CCD) meet the 24-h movement guidelines at lower rates than population norms; however, the evidence base remains limited across different stages of the lifespan and very few studies have examined associations with mental health outcomes.

Objective: This study examined 24-h movement guideline adherence among emerging adults with CCD compared to those without and associations between guideline adherence and indicators of mental health.

Methods: This cross-sectional study used data from the 2020 cycle of the Canadian Campus Wellbeing Survey.

Physical Activity Trajectories in Early Childhood: Investigating Personal, Environmental, and Participation Factors.

Introduction/purpose: To determine personal, environmental, and participation factors that predict children's physical activity (PA) trajectories from preschool through to school years.

Methods: Two hundred seventy-nine children (4.5 ± 0.

Effect of obesity treatment interventions in preschool children aged 2-6 years: a systematic review and meta-analysis.

Objectives: (1) To summarise the literature on the impact of paediatric weight management interventions on health outcomes in preschool age children with overweight or obesity and (2) to evaluate the completeness of intervention description and real-world applicability using validated tools.

Design: Systematic review and meta-analysis.

Data Sources: MEDLINE, Embase, CINAHL, Cochrane Library and PsychInfo were searched between 10 March 2015 and 21 November 2021.

A core outcome set for multimorbidity risk in individuals with cerebral palsy.

Aim: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels.

Method: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min-max: 14-68y, 52.

Implications of Disability Severity on 24-Hour Movement Guideline Adherence Among Children With Neurodevelopmental Disorders in the United States.

Background: Research has established beneficial associations between 24-hour movement guideline adherence and several health outcomes in typically developing (TD) children, but these relationships are poorly understood in children with neurodevelopmental disorders (NDD). This study examined (1) 24-hour movement guideline adherence, (2) the influence of disability severity, and (3) associations between guideline adherence and health outcomes of TD children and children with NDD.

Methods: This cross-sectional study used data from the 2018 and 2019 cycles of the US National Survey of Children's Health.

Individual and family characteristics associated with health indicators at entry into multidisciplinary pediatric weight management: findings from the CANadian Pediatric Weight management Registry (CANPWR).

Objectives: (1) To explore individual and family characteristics related to anthropometric and cardiometabolic health indicators and (2) examine whether characteristics that correlate with cardiometabolic health indicators differ across severity of obesity at time of entry to Canadian pediatric weight management clinics.

Methods: We conducted a cross-sectional analysis of 2-17 year olds with overweight or obesity who registered in the CANadian Pediatric Weight Management Registry (CANPWR) between May 2013 and October 2017 prior to their first clinic visit. Individual modifiable health behaviors included dietary intake, physical activity, screen time, and sleep.

Blood pressure in adults with cerebral palsy: a systematic review and meta-analysis of individual participant data.

Objectives: This systematic review and meta-analysis was designed to determine the overall mean blood pressure and prevalence of hypertension among a representative sample of adults living with cerebral palsy by combining individual participant data. Additional objectives included estimating variations between subgroups and investigating potential risk factors for hypertension.

Methods: Potential datasets were identified by literature searches for studies published between January 2000 and November 2017 and by experts in the field.

The Formula for Health and Well-Being in Individuals With Cerebral Palsy: Cross-Sectional Data on Physical Activity, Sleep, and Nutrition.

Objective: To determine physical activity, sleep, and nutrition patterns in individuals with cerebral palsy (CP) and investigate the association of Gross Motor Function Classification System (GMFCS) and age with these health behaviors.

Methods: A cross-sectional study was conducted in an outpatient setting. Participants included adolescents and adults with CP (n=28; GMFCS level I-V; mean age 35.

Childhood Obesity and Cardiovascular Disease Risk: Working Toward Solutions.

The prevalence of obesity in childhood is high and continues to increase globally. It is currently estimated that 381 million children worldwide have overweight or obesity. This disease stems from multiple complex pathways that can present early in life.

The effects of an individualized health-risk report intervention on changes in perceived inactivity-related disease risk in adults with cerebral palsy.

Background: To explore the effect of an individualized health-risk report intervention on changes in perceived disease risk in adults with cerebral palsy (CP).

Hypotheses: 1. Perceived disease risk from those at risk for heart disease, obesity, and/or diabetes will be greater compared to those not at risk following receipt of health-risk information; 2.

Self-reported factors contributing to fatigue and its management in adolescents and adults with cerebral palsy.

Purpose: To explore the self-reported factors that generate fatigue and to describe fatigue self-management strategies from the perspectives of adolescents and adults with cerebral palsy (CP).

Materials And Methods: Text responses to open-ended questions of the Fatigue Impact and Severity Self-Assessment from 160 participants (mean age 22.4 years) across all GMFCS levels were coded using inductive line-by-line coding and then grouped together to generate larger categories for each question.

Focus on Risk Factors for Cardiometabolic Disease in Cerebral Palsy: Toward a Core Set of Outcome Measurement Instruments.

Objective: To identify existing outcome measurement instruments (OMIs) assessing risk factors for cardiometabolic disease in adolescents and adults with cerebral palsy (CP) reported on in the literature or used in the field.

Data Sources: The COnsensus-based Standards for the selection of health Measurement Instruments database of systematic reviews and 4 electronic databases (Embase, MEDLINE/Ovid, MEDLINE/Pubmed, PsychINFO) were searched up to June 19, 2017, that yielded 2594 articles. Experts in the field were consulted to identify any additional OMIs.

Emerging evidence for accelerated ageing and cardiovascular disease in individuals with cerebral palsy.

Objective: To examine longitudinal changes in traditional and non-traditional risk factors for cardiovascular disease in individuals with cerebral palsy and to investigate relationships between age, Gross Motor Function Classification System (GMFCS) and risk of cardiovascular disease.

Methods: Individuals with cerebral palsy (n = 28 of 53 eligible participants; GMFCS levels I-V; follow-up mean age 35.1 years (standard deviation (SD) 14.

Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice.

Background: Estimates of multimorbidity, defined as the presence of at least two chronic conditions, some of which attributable to modifiable behaviours, are high in adults with cerebral palsy (CP). An assessment protocol evaluating multimorbidity risk is needed in order to develop and evaluate effective interventions to optimize lifelong health in individuals with CP. The aim of this protocol paper is to describe the development of a core outcome set (COS) for assessing multimorbidity risk in adolescents and adults with CP, to be used in clinic and research.

Differences in cardiovascular health in ambulatory persons with cerebral palsy.

Objective: To compare cardiovascular health variables and physical activity levels of adolescents and adults with cerebral palsy who are Gross Motor Func-tion Classification System (GMFCS) levels I and II.

Methods: Eleven adolescents (mean age 13.1 (standard deviation (SD) 2.

Fatigue in adults with cerebral palsy: A three-year follow-up study.

Objectives: To describe the course of fatigue over a 3-year follow-up period in adults with cerebral palsy and to investigate the association of known determinants of fatigue (i.e. demographic characteristics and/or body composition) with change in fatigue.

Cardiovascular disease and related risk factors in adults with cerebral palsy: a systematic review.

Aim: To summarize the literature on the prevalence of cardiovascular disease (CVD), risk factors of CVD, and CVD-related mortality in adults with cerebral palsy (CP).

Method: A systematic review was conducted by searching the PubMed, Embase, MEDLINE (Ovid), Cochrane, and CINAHL databases. Selection criteria included adults with CP aged 18 years or over.