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.

The Autism Treatment Network: Bringing Best Practices to All Children With Autism.

The Autism Treatment Network and Autism Intervention Research Network on Physical Health were established in 2008 with goals of improving understanding of the medical aspects of autism spectrum disorders. Over the past decade, the combined network has conducted >2 dozen clinical studies, established clinical pathways for best practice, developed tool kits for professionals and families to support better care, and disseminated these works through numerous presentations at scientific meetings and publications in medical journals. As the joint network enters its second decade continuing this work, it is undergoing a transformation to increase these activities and accelerate their incorporation into clinical care at the primary care and specialty care levels.

Transforming an Autism Pediatric Research Network into a Learning Health System: Lessons Learned.

Introduction: The Autism Speaks Autism Treatment Network that serves as the Autism Intervention and Research Network on Physical Health (ATN/AIR-P) has a mission to improve the health and well-being of children with Autism Spectrum Disorder and determine the best practices that lead to improved outcomes and expedite the translation of findings to practice. To better achieve this mission, the ATN/AIR-P is engaging in a design process to transition to a Learning Network (LN), the Autism Learning Health Network. The purpose of this paper is to: (1) make the medical and patient communities aware of an Autism LN that is based on the Institute of Medicine's definition of a Learning Health System; (2) describe how and why the ATN/AIR-P transformed to an LN; and (3) share lessons learned that might inform the transition of future existing networks surrounding other conditions.

Whole genome sequencing resource identifies 18 new candidate genes for autism spectrum disorder.

We are performing whole-genome sequencing of families with autism spectrum disorder (ASD) to build a resource (MSSNG) for subcategorizing the phenotypes and underlying genetic factors involved. Here we report sequencing of 5,205 samples from families with ASD, accompanied by clinical information, creating a database accessible on a cloud platform and through a controlled-access internet portal. We found an average of 73.

The Autism Speaks Autism Treatment Network Registry Data: Opportunities for Investigators.

Objective: Patient registries can effectively collect data over a long period of time to provide a better understanding of the typical presentation of specific conditions. The autism spectrum disorders (ASDs) have experienced a marked increase in reported prevalence over the past 20 years for reasons that are not completely clear. The Autism Treatment Network (ATN) Registry was established to facilitate investigations into a variety of questions critical to expanding our understanding of ASDs.

Prenatal and perinatal risk factors in a twin study of autism spectrum disorders.

Introduction: Multiple studies associate prenatal and perinatal complications with increased risks for autism spectrum disorders (ASDs). The objectives of this study were to utilize a twin study design to 1) Investigate whether shared gestational and perinatal factors increase concordance for ASDs in twins, 2) Determine whether individual neonatal factors are associated with the presence of ASDs in twins, and 3) Explore whether associated factors may influence males and females differently.

Methods: Data from medical records and parent response questionnaires from 194 twin pairs, in which at least one twin had an ASD, were analyzed.

Head circumferences in twins with and without Autism Spectrum Disorders.

To determine the genetic relationship between head circumference (HC) and Autism Spectrum Disorders (ASDs). Twin pairs with at least one twin with an ASD were assessed. HCs in affected and unaffected individuals were compared, as were HC correlations in monozygotic and dizygotic pairs.

Genetic heritability and shared environmental factors among twin pairs with autism.

Context: Autism is considered the most heritable of neurodevelopmental disorders, mainly because of the large difference in concordance rates between monozygotic and dizygotic twins.

Objective: To provide rigorous quantitative estimates of genetic heritability of autism and the effects of shared environment.

Design, Setting, And Participants: Twin pairs with at least 1 twin with an autism spectrum disorder (ASD) born between 1987 and 2004 were identified through the California Department of Developmental Services.