STUDIES

ADDIRC and Emotion Dysregulation (EDI)

Dr. Carla Mazefsky, PhD – University of Pittsburgh

Autism Inpatient Collection Study (AIC)

The Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC), founded in 2011, is a collaboration of specialized child psychiatry hospital units, including Western Psychiatric Institute and Clinic’s John Merck Inpatient Program that serve children and adolescents with autism and developmental disorders. The primary goal of the ADDIRC is to develop a comprehensive registry of clinical and biological data on severely affected children and adolescents with autism called the Autism Inpatient Collection (AIC). The researchers plan to look at the dimensions of expressive language ability, emotional regulation, psychiatric co-morbidity, aggression, self-injurious behavior and intelligence, and to examine the relationships among these critical factors. Under Dr. Mazefsky’s direction, the Pittsburgh site is leading an investigation of the association between emotion dysregulation and psychophysiological biomarkers. Eligibility for enrollment into the study is based on admission into one of the six inpatient units that makes up the AIC.

For more information about the sites and recent publications and presentations from ADDIRC, see Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC).

For information and questions pertaining to the Pittsburgh site/Western Psychiatric Institute and Clinic (WPIC), contact    412-334-1356.

Emotion Dysregulation Inventory (EDI)

Problems with emotional control and emotional distress in autism spectrum disorders (ASD) are common and have a significant negative impact on daily life. Treatment options for these problems are limited in part because we lack validated measures of emotion dysregulation for ASD. Most measures of emotional concerns use language that does not apply to individuals with ASD who are non-verbal or minimally verbal (e.g., “complains about, ” “worries about”) and they fail to cover the full range of presenting symptoms. The overall objective of this project is to develop and validate the Emotion Dysregulation Inventory (EDI), a new, sensitive outcome measure suitable for use across the lifespan and spectrum of ASD severity and verbal ability. Although the primary goal is related to measure development, this study will also produce the largest existing data set of symptoms of emotion dysregulation in ASD, which will provide an opportunity to better understand emotion dysregulation in ASD. Improved understanding of emotion dysregulation in ASD will clarify treatment needs, allowing for more refined clinical trials.

• EDI Young Child-(EDI-YC)-Assessment study to create a measure of emotion regulation for parents of children ages 2-5
• EDI Self-Report (EDI-SR)-Assessment study to create a self-report that measures emotion regulation for ages 12 and older

Validation of EDI with Functional Near-Infrared Spectroscopy (EDI-fNIRS)

The EDI is an ideal measure for a biological target because it is a feasible yet sensitive measure that can be easily integrated into clinical trials and clinical care.

The lateral prefrontal cortex (LPFC) is an essential component that is engaged during effective emotion regulation. Several reviews across a range of clinical populations have concluded that reduced LPFC activity is associated with emotion dysregulation (ED). The LPFC has been used as a biomarker of ED-focused treatment outcome and as a target in interventions to reduce ED. Although the research to of ED in ASD is limited, less activation of the LPFC has been found during emotion regulation attempts in autistic adults, leading to conclusions that reduced LPFC activation may also underlie ED in ASD.

The overall objective of this project is to provide validation of the Emotion Dysregulation Inventory (EDI) . Functional near infrared spectroscopy (fNIRS) is an ideal method to establish the neural validity of EDI. fNIRS uses near-infrared light to measure hemoglobin concentration related to the neural activity in cortical areas of the brain. Although able to capture similar cortical hemodynamic response information as fMRI, fNIRS measures both oxygenated and deoxygenated hemoglobin, whereas fMRI measures only oxygenated hemoglobin. fNIRS also has several practical advantages because it is non-invasive, safe, noiseless, and painless. The fNIRS headpiece worn by the participant allows them to move, interact with the task and investigator, or even speak during testing. fNIRS has been used to measure neural activation in subjects with ASD, including within the REAACT lab.

This EDI-fNIRS study is accepting participants with a child ages 4-8. They will complete a questionnaire battery (including the EDI), assessments, and the child will complete a 30-minute fNIRS session. Participants will have the opportunity to receive a prize after the fNIRS session.

For more information, contact 412-246-5485 or autismrecruiter@upmc.edu

Exploring Positive and Negative Dimensions in ASD (EXPAND)

​Led by Dr. Jennifer Foss-Feig at Mt. Sinai, Dr. Mazefsky and her colleagues will develop and validate a dimensional observer-report measure of positive and negative features of ASD. This assessment study is designed to create a measure of autism symptoms for parents of children ages 3-11.

The overall objective of this proposal is to use gold-standard procedures to develop and validate a psychometrically rigorous, sensitive new measure to quantify variability within ASD along novel, biologically-plausible dimensions that can concretely be targeted for intervention and measurably show change. Learn more about the research award here.

Developing a Gold Standard for Tracking Adult Functional Outcomes in ASD (Adult Functioning Scale)

A major methodological obstacle to more informed policies to support the successful transition to adulthood is the absence of suitable measures of functional outcomes for adults with ASD. Landmark studies of adult outcome have traditionally classified individuals as having good, fair, or poor outcomes, a rating which has low reliability and is generally insensitive to treatment-related changes. Other studies have utilized adaptive behavior scales as functional outcome measures even though they were not designed for that purpose or measures that have never been evaluated in ASD.

The objective of this project is to develop efficient and validated self-report measure of functional outcome for adults with ASD – the Adult Functioning Scale (AFS). In the final year of the project, we will collaborate with investigators at Drexel and the University of Pennsylvania to and establish the validity of the AFS utilizing state-level service utilization data. The availability of the Adult Functioning Scale for ASD is likely to yield a precise, efficient, and sensitive measure, which in turn would improve progress monitoring capabilities and support more informed adult transition policies. The AFS study is accepting adults with an autism spectrum disorder (ASD) diagnosis and caregivers of adults with ASD.

To find out more and to see if you qualify for these studies, please contact autismrecruiter@upmc.edu or 1-866-647-3436.