Improving access to services in neuro-developmental disability: proceedings of a national meeting to advance community capacity.

As part of a participatory project to advance navigational service delivery systems for children with neurodevelopmental disability (NDD) and their families, this paper addresses proceedings from a capacity-building conference in Vancouver, Canada. A total of 29 invited key stakeholders attended the meeting with the following aims: knowledge sharing amongst provincial/territorial regions advancing NDD navigation capacity; sustainable action-oriented knowledge exchange; and operationalizing next steps to build navigation resources across Canadian regions. Regional representation included multiple and inter-sectoral partners (e.

Left-Right Brain-Wide Asymmetry of Neuroanatomy in the Mouse Brain.

Left-right asymmetry of the human brain is widespread through its anatomy and function. However, limited microscopic understanding of it exists, particularly for anatomical asymmetry where there are few well-established animal models. In humans, most brain regions show subtle, population-average regional asymmetries in thickness or surface area, alongside a macro-scale twisting called the cerebral petalia in which the right hemisphere protrudes anteriorly past the left.

Orthotists' perspectives on the adjustment of 3D printed ankle foot orthoses: A mixed methods feasibility study.

Background: An important part of the orthotic treatment process includes performing adjustments to the shape or design of the orthosis to improve its fit and function. However, the ability to adjust 3D printed (3DP) materials is not well understood.

Objectives: (1) To evaluate the usability of completing adjustments on 3DP ankle foot orthoses (AFOs) vs.

Efficacy and Safety of OnabotulinumtoxinA for the Treatment of Pediatric Upper and Lower Limb Spasticity: Results From 2 Open-Label, Long-term Extension Trials.

Aim: To evaluate the efficacy and safety of onabotulinumtoxinA for treating upper and lower limb spasticity among pediatric patients in 2 open-label extension trials.

Methods: Patients aged <18 years received ≤5 doses of onabotulinumtoxinA (maximum: 8 U/kg [300 U], cycle 1; 10 U/kg [340 U], cycles 2-5) over 60 weeks. Week 6 efficacy endpoints included mean change from baseline in Modified Ashworth Scale-Bohannon and Modified Tardieu Scale scores, and mean Clinical Global Impression of Overall Change score.

Chromosome X-wide common variant association study in autism spectrum disorder.

Autism spectrum disorder (ASD) displays a notable male bias in prevalence. Research into rare (<0.1) genetic variants on the X chromosome has implicated over 20 genes in ASD pathogenesis, such as MECP2, DDX3X, and DMD.

Genetic variants in DDX53 contribute to autism spectrum disorder associated with the Xp22.11 locus.

Autism spectrum disorder (ASD) exhibits an ∼4:1 male-to-female sex bias and is characterized by early-onset impairment of social/communication skills, restricted interests, and stereotyped behaviors. Disruption of the Xp22.11 locus has been associated with ASD in males.

The experiences of parents of children with disabilities receiving healthcare services: Negative emotions and associated situations.

Purpose: To explore the negative emotions expressed by parents of children with disabilities when describing their experiences with pediatric health care.

Methods: Quotes mentioning negative emotional experiences and the situations in which these arose were identified in 13 transcribed focus group conversations involving 65 Canadian parents of children with neurodevelopmental disabilities. Data were analyzed using content analysis.

A systematic review of racial health disparities among children and youth with physical disabilities.

Purpose: Children and youth who belong to a racially minoritized group commonly experience multiple and complex forms of discrimination and health disparities. The purpose of this review was to explore racial disparities in health care and health outcomes among children and youth with physical disabilities.

Methods: Six international databases (Ovid Medline, Healthstar, Embase, PsycINFO, Scopus, and Web of Science) were searched and screened for inclusion.

Experiences and factors affecting poverty among families raising a child with a disability: a scoping review.

Purpose: Children with disabilities and their families are more likely to live in poverty than those without a disability. However, little is known about their lived experiences and the circumstances that influence their socio-economic condition. The aim of this study was to understand the experiences and factors affecting poverty among families raising children with disabilities.

Impacts of the COVID-19 pandemic on access to sexual and reproductive health services for women and gender-diverse people with disabilities in Canada: a qualitative study.

The COVID-19 pandemic has had a detrimental impact on sexual and reproductive health (SRH) and rights globally. However, little is known about the experiences of people with disabilities accessing SRH services during the COVID-19 pandemic. In this community-engaged qualitative study, we examined COVID-related impacts on access to SRH services for people with disabilities.

Clinical Actionability of Genetic Findings in Cerebral Palsy: A Systematic Review and Meta-Analysis.

Importance: Single gene variants can cause cerebral palsy (CP) phenotypes, yet the impact of genetic diagnosis on CP clinical management has not been systematically evaluated.

Objective: To evaluate how frequently genetic testing results would prompt changes in care for individuals with CP and the clinical utility of precision medicine therapies.

Data Sources: Published pathogenic or likely pathogenic variants in OMIM genes identified with exome sequencing in clinical (n = 1345) or research (n = 496) cohorts of CP were analyzed.

Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project.

Introduction: Patient engagement in research aims to foster meaningful partnerships, integrating patient experiences into the research process. This paper describes the development of a Terms of Reference (ToR) to support these meaningful partnerships. While engagement improves data collection and empowerment, ineffective engagement can lead to negative outcomes.

A cross-species analysis of neuroanatomical covariance sex difference in humans and mice.

Structural covariance in brain anatomy is thought to reflect inter-regional sharing of developmental influences - although this hypothesis has proved hard to causally test. Here, we use neuroimaging in humans and mice to study sex-differences in anatomical covariance - asking if regions that have developed shared sex differences in volume across species also show shared sex difference in volume covariance. This study design illuminates both the biology of sex-differences and theoretical models for anatomical covariance - benefitting from tests of inter-species convergence.

Adverse events associated with the delivery of telerehabilitation across rehabilitation populations: A scoping review.

Objective: This scoping review aimed to map existing research on adverse events encountered during telerehabilitation delivery, across rehabilitation populations. This includes identifying characteristics of adverse events (frequency/physical/non-physical, relatedness, severity) and examining adverse events by different modes of telerehabilitation delivery and disease states.

Introduction: Telerehabilitation, a subset of telemedicine, has gained traction during the COVID-19 pandemic for remote service delivery.

Investigating the association between generalized anxiety symptoms and social and communication impairments of autistic youth.

Background: Past research has found that overall anxiety and social anxiety symptoms are associated with the occurrence of social and communication challenges within autistic populations.

Objective: The aim of this study was to determine whether generalized anxiety disorder symptoms were associated with social and communication symptoms in autistic youth.

Method: The cross-sectional sample was comprised of 253 autistic youth aged 8-18 (196 Males, 57 Females).

Parental expectations of residential immersive life skills programs for youth with disabilities and their perception of youth changes.

Purpose: This study explored parents' expectations before their youth with a disability attended a Residential Immersive Life Skills (RILS) program, and perceptions of youth change over the following 12 months. Understanding expectations is important because parents play a key role in shaping their youth's ongoing development and future hopes when they return home.

Methods: A secondary analysis of qualitative interviews with 13 parents was conducted using a recurrent cross-sectional analysis approach at three time-points: before youth attended a RILS program, and three and 12 months post-program.

The role of race and ethnicity in leisure participation among children and youth with disabilities: a systematic review.

Purpose: Racial and ethnic minoritized children and youth with disabilities participate less often in structured leisure activities compared to their white peers and yet, little is known about the role of race/ethnicity in their participation. The purpose of this review was to understand the role of race/ethnicity in leisure participation of children and youth with disabilities.

Methods: We systematically assessed peer-reviewed studies published from 2000 to 2023 in six international databases.

An environmental scan of limb loss rehabilitation centers across Canada.

Background: The clinical landscape of limb loss rehabilitation across Canada is poorly delineated, lacks standard rehabilitation guidelines, and is without a shared clinical database.

Objective: To address these gaps, the objective of the present study was to undertake an environmental scan of the rehabilitation centers across Canada that provide inpatient and/or outpatient services to the limb loss community.

Study Design: An environmental scan was conducted to describe the rehabilitation service structure, program services, and outcome measures of sites across Canada.

Exploring the employment experiences of young adults with multiple minoritized identities: A qualitative study focusing on race and non-apparent disabilities.

Youth with disabilities often encounter many challenges in securing employment. Although the common barriers that youth face are well documented, little is known about the experiences of youth who have multiple minoritized identities in finding and maintaining employment. Youth with disabilities who belong to racial minoritized groups may encounter ableism and racism and other forms of discrimination at work.

Oops, we missed a spot: Comparing data substitution methods for non-random missing survey data in a longitudinal study.

Imputation methods for missing data may not always be applicable, namely, when the data were completely missing for the whole sample. To estimate the missing data, we compared three missing item substitution methods: (1) mean substitution; (2) last observation carried forward (LOCF); and (3) regression-predicted values. A total of 384 parents reported their 8- to 18-year-old children's anxiety level using the 9-item Screen for Child Anxiety Related Disorders at baseline (Time 1) and two later time points, drawing from a larger longitudinal study (Ontario COVID-19 and Kids' Mental Health Study).