The purpose of this multi-site study is to develop and evaluate a multi-phase implementation and sustainment strategy to support evidence-based practice use across different interventions for individuals with autism, settings, and ages.
*In partnership with UCLA, UC Davis, Rochester, Penn, Drexel, and Kansas
The aims of the current project are to: 1) Engage stakeholders to identify targets for ACT SMART redesign to optimize its fit for middle and high school providers who serve autistic adolescents; 2) Conduct prototyping and usability field testing of the redesigned ACT SMART and iteratively refine to ensure usability, feasibility, acceptability, and appropriateness for use in schools.
In Mongolia, there are virtually no services or professionals who can provide any related services for autistic children and their families. In response to these disparities of autism care in many countries, the WHO developed the Caregiver Skills Training (CST), which is a training program that teaches basic behavior management skills that are often needed for caregivers of autistic children. Although CST can be widely disseminated among Mongolian families, it has not been translated or adapted to fit the needs of Mongolian caregivers due to logistical difficulties and costs. This project aims to: (a) conduct rigorous cultural adaptation and translation of the CST materials, and (b) demonstrate community-academic partnership and a model for global collaboration in autism intervention research
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.
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.
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).
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.
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.
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.
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).
