Although the efficacy of early intervention (EI) for autistic children and their families has been established, many marginalized families with diverse cultural and linguistic backgrounds still report inequitable access to evidence-based practices (EBP). The proposed research addresses three aims including: AIM 1. Identify facilitators and barriers of EBP implementation among marginalized families of young autistic children in EI; AIM 2. Develop an implementation toolkit with a focus on capacity building of EI providers to implement EBP with cultural responsiveness; and AIM 3. Examine the feasibility, acceptability, and appropriateness of this toolkit through a pilot trial using RUBI behavioral parent training program.
Targeted Condition: Autism Spectrum Disorder
Developing a pediatric telebehavioral health consultation model for emergency departments
As rates of pediatric mental health emergencies have skyrocketed over the last decade – and even more so since the Covid-19 pandemic – the number of youth staying in emergency departments (EDs) and medical units while awaiting inpatient psychiatric care or stabilization (i.e., “boarding”) has reached unprecedented levels. The massive surges in patient volume, coupled with widespread staff shortages and lack of staff expertise in treating mental health, are overwhelming ED and hospital resources. This causes dangerous or even life-threatening delays in care for youth populations in greatest need of medical and psychiatric treatment. Prolonged ED stays not only delay necessary mental health care, but they can cause additional trauma and distress for youth already in crisis. While the boarding crisis affects all hospitals and EDs, it poses an even greater challenge to community EDs that lack on-site mental health specialists and/or pediatric providers.
To address the boarding crisis, this project will pilot a model in which a multidisciplinary team of mental health clinicians at Seattle Children’s Hospital provides telebehavioral health consultation to community EDs in Western Washington to guide care for youth who are boarding. The primary goals of this model are (1) to improve timeliness of mental health care and reduce length of stay for youth boarding in community EDs, and (2) to support ED staff in providing more developmentally appropriate and evidence-informed mental healthcare. The Seattle Children’s team will provide case consultation to ED providers and staff, including support with decisions about hospitalization, medication treatment, behavioral interventions and case management services. The team will also deliver practical trainings to community ED staff to build their internal capacity to care for boarding youth. If this initiative is successful, additional funding could expand ED telebehavioral health consultation services statewide, with a focus on rural communities.
Exploring mechanisms of change in a pilot trial of the RUBI Program in educational settings
The purpose of this study is to: 1) compare schools randomized to the RUBIES intervention or a usual-care in-service training on teacher burnout and disruptive behavior in children with autism spectrum disorder; and 2) test RUBIES’ mechanisms of change (knowledge and skills) on teacher (burnout), child (disruptive behavior), and implementation outcomes (fidelity).
Engaging families of children with rare genetic disorders via a novel online platform
The goal of this project is to engage more families of children with CHD8 mutations with a novel online platform (GroopIt) and to empower families to be partners in research. We are utilizing a community-based participatory research (CBPR) approach to enable families to identify research priorities. Through an established Facebook group for CHD8, families will be surveyed to prioritize research topics of interest that were identified in previous focus groups, such as parenting stress or gastrointestinal problems. The use of the updated GroopIt platform as an innovative, online tool will increase both the engagement and accessibility of research to families of children with rare genetic disorders associated with ASD.
Disseminating a user-friendly guide: Advancing the science of intervention adaptation and improving access to evidence-based psychological treatment
Adaptation of evidence-based practices and programs (EBPs) is a necessary component of the implementation process. EBPs must be adapted to function with the constraints of real-world practice settings, providers’ expertise, and patients’ needs. The science of intervention adaptation is hungry for well-defined methods of EBP adaptation to guide decision making. A how-to guide for EBP adaptation titled MODIFI: Making Optimal Decisions for Intervention Flexibility during Implementation, is under development with NIMH funding (F32 MH116623). MODIFI will be disseminated via multiple strategies locally, nationally, and internationally. Dissemination of MODIFI will improve the practice of intervention adaptation by providing practitioners with a how-to guide that is (a) evidence-based, (b) usable, and (c) supported by the expert consensus of implementation practitioners and researchers.
Gender Exploration of Neurogenetics and Development to Advanced Autism Research (GENDAAR 2.0)
The GENDAAR 2.0 study is part of the Autism Center of Excellence (ACE Network), which includes researchers from across the country. The main goal of this follow up study is to investigate the transition through adolescence and into young adulthood. We aim to identify sex differences in individuals with autism spectrum disorders (ASD) and look at their brain development during this important transition. We will compare the data collected with individuals with ASD, to siblings of children with ASD and children with no family history of ASD. We will use a variety of methods: neuropsychological testing, EEG, fMRI, and genetics. By learning more about sex differences, we aim to improve techniques for diagnosis and interventions.
Clinical study of cannabidiol in children and adolescents with Fragile X (CONNECT-FX) & Open-Label Extension (CONNECT-FX OLE)
To evaluate the efficacy of ZYN002 administered as a transdermal gel formulation, for up to 12 weeks, in patients ages 3 to <18 years, in the treatment of symptoms of Fragile X Syndrome (FXS).
A randomized, double-blind, placebo-controlled study of the safety, tolerability, and efficacy of Arbaclofen in subjects with 16p11.2 deletion (16p del)
To examine the safety, tolerability, and efficacy of arbaclofen for the treatment of neurodevelopmental impairments in subjects with 16p11.2 deletion
Connectivity in the Brain and Autism (COBRA) Study
The COBRA study seeks to identify the specific neural circuits that are altered in autism spectrum disorder (ASD). Our experiments test the strength of “divisive normalization”, a measure that describes how neurons in the brain suppress each other. Our hypothesis is that suppressive interactions are reduced in individuals with ASD. Because suppressive neural interactions are well understood in the visual system, we use it as a model system. Suppressive neural interactions are measured in response to precisely controlled visual stimuli with a variety of brain measures including functional MRI to index neural responses, diffusion MRI to describe their anatomical connections, and EEG to understand their dynamics.
Autism biomarkers consortium for clinical trials
This is a multicenter longitudinal study that aims to identify, develop and validate a set of measures that can be used as stratification biomarkers and/or sensitive and reliable objective measures of social impairment in ASD that could serve as markers of long term clinical outcome.
