Preferences for Outcome Data Collection and Access in a Pediatric Autism Learning Health Network Registry.

Objective: Health professionals participating in learning health networks collect data for informing clinical decision-making, research, and quality improvement (QI). To optimize the collection and use of clinical and Parent Reported Outcome (PRO) data for these purposes, it is important to understand the priorities of patient registry "end users" (clinicians, researchers, and patients/families).

Methods: The analysis used a sequential mixed-methods approach with parent (n = 93) and clinician (n = 167) surveys followed by targeted interviews (parent n = 9, clinician/researcher n = 7) completed at Autism Care Network (ACNet) sites to better understand current use of registry data and parent/clinician priorities.

The Value of ECHO Autism to Primary Care Providers: Building Community and Capacity.

Objectives: The Extension for Community Healthcare Outcomes (ECHO) model has been shown to increase primary care providers' (PCPs) knowledge and self-efficacy in caring for patients with autism spectrum disorder (ASD). Benefits of ECHO Autism participation may not be fully captured in studies measuring only quantitative outcomes. Qualitative methodology was used to explore the perceptions, meaning, and impact of ECHO Autism from the perspective of participating PCPs.

Survey of the Landscape of Society Practice Guidelines for Genetic Testing of Neurodevelopmental Disorders.

Genetic testing of patients with neurodevelopmental disabilities (NDDs) is critical for diagnosis, medical management, and access to precision therapies. Because genetic testing approaches evolve rapidly, professional society practice guidelines serve an essential role in guiding clinical care; however, several challenges exist regarding the creation and equitable implementation of these guidelines. In this scoping review, we assessed the current state of United States professional societies' guidelines pertaining to genetic testing for unexplained global developmental delay, intellectual disability, autism spectrum disorder, and cerebral palsy.

Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association.

Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease.

Stimulant Medication Treatment in Children with Congenital Heart Disease and Attention-Deficit/Hyperactivity Disorder: Cardiovascular Outcomes.

Objective: Children with congenital heart disease (CHD) are at increased risk for attention-deficit/hyperactivity disorder (ADHD). The aim of this study was to determine whether children with CHD and ADHD clinically treated with stimulant medication were at increased risk for changes in cardiovascular parameters or death compared with CHD-matched controls.

Methods: In this retrospective cohort study, patients with CHD + ADHD treated with stimulant medication (exposed group [EG]) were matched by CHD diagnosis and visit age to patients not on stimulants (nonexposed group [NEG]).

Altered white matter connectivity in children with congenital heart disease with single ventricle physiology.

Children born with congenital heart disease (CHD) have seen a dramatic decrease in mortality thanks to surgical innovations. However, there are numerous risk factors associated with CHD that can disrupt neurodevelopment. Recent studies have found that psychological deficits and structural brain abnormalities persist into adulthood.

Characterisation of neurodevelopmental and psychological outcomes in CHD: a research agenda and recommendations from the cardiac neurodevelopmental outcome collaborative.

The Neurodevelopmental and Psychological Outcomes Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute with the goals of identifying knowledge gaps regarding the neurodevelopmental and psychological outcomes of individuals with CHD and investigations needed to advance science, policy, clinical care, and patient/family outcomes. Accurate characterisation of neurodevelopmental and psychological outcomes in children with CHD will drive improvements in patient and family outcomes through targeted intervention. Decades of research have produced a generalised perspective about neurodevelopmental and psychological outcomes in this heterogeneous population.

Pattern of head circumference growth following bidirectional Glenn in infants with single ventricle heart disease.

Background: Infants with single ventricle congenital heart disease demonstrate increasing head growth after bidirectional Glenn; however, the expected growth trajectory has not been well described.

Aims: 1) We will describe the pattern of head circumference growth in the first year after bidirectional Glenn. 2) We will determine if head growth correlates with motor developmental outcomes approximately 12 months after bidirectional Glenn.

Long-Term Neurocognitive and Psychosocial Outcomes After Acute Myeloid Leukemia: A Childhood Cancer Survivor Study Report.

Background: Survivors of childhood acute myeloid leukemia (AML) are vulnerable to medical late effects of treatment; however, less is known about their psychosocial outcomes. This study evaluated neurocognitive and psychosocial outcomes in long-term AML survivors treated with bone marrow transplantation (BMT) or intensive chemotherapy (IC) without BMT.

Methods: AML survivors (N = 482; median age at diagnosis = 8 [range = 0-20] years; median age at evaluation = 30 [range = 18-49] years) treated with BMT (n = 183) or IC (n = 299) and sibling controls (N = 3190; median age at evaluation = 32 [range = 18-58] years) from the Childhood Cancer Survivor Study were compared on emotional distress (Brief Symptom Inventory-18), neurocognitive problems (Childhood Cancer Survivor Study Neurocognitive Questionnaire), health-related quality of life (SF-36), and social attainment.

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.

The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network.

Objectives: To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps.

Methods: A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites.

Improving Access to Diagnostic Assessments for Autism Spectrum Disorder Using an Arena Model.

Objective: To improve access to diagnostic evaluations for children younger than 3 years with concerns for possible autism spectrum disorder.

Methods: A multidisciplinary "arena model" for children younger than 3 years was developed, tested, and implemented over an approximately 2-year period. Arena assessment teams comprised a developmental behavioral pediatrician (DBP), psychologist, and speech language pathologist (SLP).

Ambient ozone and fine particulate matter exposures and autism spectrum disorder in metropolitan Cincinnati, Ohio.

Background: Epidemiological studies report fairly consistent associations between various air pollution metrics and autism spectrum disorder (ASD), with some elevated risks reported for different prenatal and postnatal periods.

Objectives: To examine associations between ASD and ambient fine particulate matter (PM) and ozone concentrations during the prenatal period through the second year of life in a case-control study.

Methods: ASD cases (n = 428) diagnosed at Cincinnati Children's Hospital Medical Center were frequency matched (15:1) to 6420 controls from Ohio birth records.

Evidenced-Based Interventions for Children With Autism Spectrum Disorder.

Unlabelled: This paper reviews evidenced-based interventions for children with autism spectrum disorders (ASD) across the disciplines of psychology, speech-language pathology, occupational therapy, and developmental pediatrics.

Background: rates of ASD diagnoses have been steadily rising over the past 2 decades. There are a wide range of therapies and interventions, of varying levels of evidence, across disciplines that are now available to treat children with ASD.

Identifying Associations Among Co-Occurring Medical Conditions in Children With Autism Spectrum Disorders.

Objective: Children with autism spectrum disorder (ASD) have a high prevalence of co-occurring medical conditions, including speech, sleep, and gastrointestinal disorders (constipation and feeding difficulties); developmental delay; attention deficit/hyperactivity disorder; hypotonia; epilepsy; anxiety; disruptive behavior; pica; and eczema. Less is known about whether these commonly coexist in the same children. We sought to determine clinically meaningful, statistically significant associations among co-occurring medical conditions in children with ASD that could lead to better understanding, identification, and treatment of these disorders.

Characteristics of Treatment Decisions to Address Challenging Behaviors in Children with Autism Spectrum Disorder.

Objective: To describe the characteristics of treatment decisions to address challenging behaviors in children with autism spectrum disorder (ASD).

Methods: Parents of children aged 4 to 15 years with ASD seen in a developmental behavioral pediatric (DBP) clinic completed validated measures to characterize their child's behaviors and their own level of stress. Parents reported their treatment priority before the visit.

Comparing treatments for children with ADHD and word reading difficulties: A randomized clinical trial.

Objective: This trial compared attention-deficit/hyperactivity disorder (ADHD) treatment alone, intensive reading intervention alone, and their combination for children with ADHD and word reading difficulties and disabilities (RD).

Method: Children (n = 216; predominantly African American males) in Grades 2-5 with ADHD and word reading/decoding deficits were randomized to ADHD treatment (medication + parent training), reading treatment (reading instruction), or combined ADHD + reading treatment. Outcomes were parent and teacher ADHD ratings and measures of word reading/decoding.

High burden of genetic conditions diagnosed in a cardiac neurodevelopmental clinic.

Background: There is a known high prevalence of genetic and clinical syndrome diagnoses in the paediatric cardiac population. These disorders often have multisystem effects, which may have an important impact on neurodevelopmental outcomes. Taken together, these facts suggest that patients and families may benefit from consultation by genetic specialists in a cardiac neurodevelopmental clinic.

Adolescent Perceptions of Outgrowing Childhood Attention-Deficit Hyperactivity Disorder: Relationship to Symptoms and Quality of Life.

Objective: Parental and self-perceptions about outgrowing attention-deficit hyperactivity disorder (ADHD) likely impact treatment decisions; however, little is known about these perceptions. The aim of this study was to assess adolescent and parent perceptions of outgrowing childhood ADHD and evaluate how these perceptions relate to ADHD symptoms and quality of life (QoL).

Method: Cross-sectional survey of adolescents (13-18 years) with a childhood diagnosis of ADHD and their parents.

Does Congenital Heart Disease Affect Neurodevelopmental Outcomes in Children with Down Syndrome?

Objective: The impact that congenital heart disease (CHD) has on the neurodevelopment of children with Down syndrome (DS) is unknown and potentially has implications for targeted early intervention. This study assessed the relationship between CHD that required surgery in the first year of life and neurodevelopmental, behavioral and emotional functioning outcomes in children with DS.

Methods: A retrospective chart review of 1092 children (0-18 years) with DS who visited a single institution from 8/08-8/13 was performed.

Maternal metabolic risk factors for autism spectrum disorder-An analysis of electronic medical records and linked birth data.

Past studies have suggested that conditions experienced by women during pregnancy (e.g. obesity and gestational diabetes mellitus (GDM)) may be associated with having a child with autism spectrum disorder (ASD).