Evidence-based recruitment strategies for clinical research: Study personnel's and research participants' perceptions about successful methods of outreach for a U.S. Autism-Research Cohort.

Introduction: Under enrollment of participants in clinical research is costly and delays study completion to impact public health. Given that research personnel make decisions about which strategies to pursue and participants are the recipients of these efforts, we surveyed research staff ( = 52) and participants ( = 4,144) affiliated with SPARK (Simons Foundation Powering Autism for Knowledge) - the largest study of autism in the U.S.

Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism.

Background: SPARK launched in 2016 to build a US cohort of autistic individuals and their family members. Enrollment includes online consent to share data and optional consent to provide saliva for genomic analysis. SPARK's recruitment strategies include social media and support of a nation-wide network of clinical sites.

Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study.

To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions, transition concerns, and the re-consenting process. Questions regarding guardianship were difficult for parents unsure of a teen's future status.

Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism.

The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety.

The Autism Impact Measure (AIM): Meaningful Change Thresholds and Core Symptom Changes Over One Year from an Online Survey in the U.S.

Validated outcome measures with the capacity to reflect meaningful change are key to assessing potential interventions for autism spectrum disorder (ASD). We derive clinically meaningful change thresholds (MCTs) of the Autism Impact Measure (AIM) and identify factors associated with meaningful change. Baseline and 12-months follow-up survey of caregivers of 2,761 children with ASD aged 3-17 years from the U.

Effect of Children's Autism Spectrum Disorder Severity on Family Strain and Sleep Quality: A Cross-Sectional Online Survey in the U.S.

To better understand the impact of children's autism spectrum disorder (ASD) severity on families, we evaluated pathways through which ASD severity affected child sleep quality, caregiver strain, and caregiver sleep quality. In a cross-sectional analysis through the U.S.

Psychological distress among caregivers raising a child with autism spectrum disorder during the COVID-19 pandemic.

The COVID-19 pandemic may disproportionately impact parents of children with autism spectrum disorder (ASD). Loss of services and supports, heightened fears about increased infection rates, and disruption of daily routines likely adversely affect the well-being of children with ASD and their families. The goal of this study was to examine differences in psychological distress-as defined by symptoms of anxiety, depression, loneliness, and hyperarousal-between parents raising a child with ASD and parents in the US as a whole during the early stages of the pandemic (March-April 2020).

Risperidone versus aripiprazole fracture risk in children and adolescents with autism spectrum disorders.

Risperidone and aripiprazole, commonly used antipsychotics in children with autism spectrum disorder (ASD), have previously been associated with elevated fracture risk in other populations. The aim of this study was to evaluate and compare the risk of fracture among children with ASD using risperidone or aripiprazole. This was a retrospective, propensity-score matched cohort study, set between January 2013 and December 2018.

Information Avoidance and Information Seeking Among Parents of Children With ASD.

We estimated the effects of information avoidance and information seeking among parents of children diagnosed with autism spectrum disorder (ASD) on age of diagnosis. An online survey was completed by 1,815 parents of children with ASD. Children of parents who self-reported that they had preferred "not to know," reported diagnoses around 3 months later than other children.

Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers' reported impact on their dependent's services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden.

Clinical signs associated with earlier diagnosis of children with autism Spectrum disorder.

Background: The objective of this study is to gain new insights into the relationship between clinical signs and age at diagnosis.

Method: We utilize a new, large, online survey of 1743 parents of children diagnosed with ASD, and use multiple statistical approaches. These include regression analysis, factor analysis, and machine learning (regression tree).

Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress.

The COVID-19 pandemic has disrupted lives around the world. Autistic adults are at higher risk for co-occurring medical and psychiatric conditions and may be more prone to difficulties adapting to pandemic-related changes and social distancing mandates and coping with ongoing uncertainties. On the other hand, the pandemic may lead to greater understanding and acceptance of accommodations in the broader community that may facilitate supports for autistic adults beyond the pandemic.

Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort.

The impact of the 2019 coronavirus pandemic (COVID-19) in the United States is unprecedented, with unknown implications for the autism community. We surveyed 3502 parents/caregivers of individuals with an autism spectrum disorder (ASD) enrolled in Simons Powering Autism Research for Knowledge (SPARK) and found that most individuals with ASD experienced significant, ongoing disruptions to therapies. While some services were adapted to telehealth format, most participants were not receiving such services at follow-up, and those who were reported minimal benefit.

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.

Correction to: Psychometric Validation of the Autism Impact Measure (AIM).

The article Psychometric Validation of the Autism Impact Measure (AIM), written by Richard Houghton, Brigitta Monz, Kiely Law, Georg Loss, Stephanie Le Scouiller, Frank de Vries and Tom Willgoss was originally published electronically on the publisher's internet portal (currently SpringerLink) on 09 April 2019 without open access.With the author(s)' decision to opt for Open Choice the copyright of the article changed on May 2019 to © The Author(s) 2019 and the article is forthwith distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.

Epilepsy and Autism Severity: A Study of 6,975 Children.

Epilepsy is known to occur in a higher-than-expected proportion of individuals with autism spectrum disorders (ASDs). Prior studies of this heterogeneous disorder have suggested that intelligence quotient (IQ) may drive this relationship. Because intellectual disability (ID) is, independently of ASD, a risk factor for epilepsy, current literature calls into question the long-understood unique relationship between ASD and epilepsy.

Psychometric Validation of the Autism Impact Measure (AIM).

The Autism impact measure (AIM) is a caregiver-reported questionnaire assessing autism symptom frequency and impact in children, previously shown to have good test-retest reliability, convergent validity and structural validity. This study extended previous work by exploring the AIM's ability to discriminate between 'known-groups' of children, and estimating thresholds for clinically important responses. Data were collected online and electronically on computer and mobile devices; hence, it was also possible to confirm other psychometric properties of the AIM in this format.

Elopement Patterns and Caregiver Strategies.

The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome.

Sex differences in employment and supports for adults with autism spectrum disorder.

This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and completed an Internet survey. Outcome variables included current employment status, number of hours working, number of jobs in the past 5 years, reasons for unemployment, as well as the number of benefits received and the amount of financial support currently being received from families of origin.

Treatment patterns in children with autism in the United States.

Children with autism receive different types of non-drug treatments. We aimed to describe caregiver-reported pattern of care and its variability by geography and healthcare coverage in a US-wide sample of children aged 3-17 years. We recruited caregivers from the Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort.

Early Antibiotics and Childhood Obesity: Do Future Risks Matter to Parents and Physicians?

To understand how parents and physicians make decisions regarding antibiotics and whether a potential associated risk of obesity would alter decisions, we conducted a qualitative study of parents and physicians who care for children. Parent focus groups and physician interviews used a guide focused on experience with antibiotics and perceptions of risks and benefits, including obesity. Content analysis was used to understand how a risk of obesity would influence antibiotic decisions.

Anxiety and Mood Disorder in Children With Autism Spectrum Disorder and ADHD.

Objectives: Autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) frequently co-occur. Understanding the endophenotype of children with both ASD and ADHD may impact clinical management. In this study, we compare the comorbidity of anxiety and mood disorders in children with ASD, with and without ADHD.

Large Databases for Pediatric Research on Children with Autism Spectrum Disorder.

Objective: This article reviews the data available in 3 large databases for use in conducting studies of children with autism spectrum disorder (ASD).

Methods: The article describes the data structure, data elements, and strengths and weaknesses of the 3 data sets.

Results: Each of the 3 data sets, the Interactive Autism Network (IAN), the Autism Treatment Network (ATN), and PEDSnet have large cohorts of children with ASD.