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Micah Mazurek, PhD Associate Professor Curry School of Education & Human Development Supporting Transformative Autism Research (STAR) Initiative

Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

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Page 1: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Micah Mazurek, PhDAssociate Professor

Curry School of Education & Human Development

Supporting Transformative Autism Research (STAR) Initiative

Page 2: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

A Journey

Page 3: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

The Challenge

Increasing Prevalence

Page 4: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Critical Gaps

Prevalence & awarenessFamilies seeking answersNeed for support

Critical knowledge gapsFew treatment optionsFew trained professionals

Page 5: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Challenges & OpportunitiesCauses &

MechanismsDiagnosis & AssessmentEffective

TreatmentsHealth & Well-beingLeveraging

StrengthsMeaningful Positive

Outcomes

Page 6: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Transformative Solutions at UVA• University Investments Catalyzing Autism Research

• Cluster Hires in Autism• Seed Funding from the Curry School of Education• Key Partnerships with the UVA Brain Institute & UVA Data Science

Institute• Strategic Investment Fund: Supporting Transformative Autism

Research (STAR)

Advancing the Pace of Discovery

Page 7: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

UVA Autism Initiative

Mission: To improve the lives

of individuals with autism and their

families

Transformative Research

Developing & Testing New Models

Training & Education

Outreach & Dissemination

Page 8: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

UVA Autism Initiative

Transformative Research

Developing & Testing New Models

Training & Education

Outreach & Dissemination

Neuroscience Applied Practice• Underlying mechanisms• Novel treatments & tools• Harnessing data• Leveraging technology

Page 9: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

UVA Autism Initiative

Transformative Research

Developing & Testing New Models

Training & Education

Outreach & Dissemination

Assessment Intervention• Faster, more accurate diagnoses• More effective interventions & supports• Data-driven, scalable models• Increasing access to care

Page 10: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

UVA Autism Initiative

Transformative Research

Developing & Testing New Models

Training & Education

Outreach & DisseminationBuilding Professional Capacity• UVA Students Professionals• Technology to Increase Reach• Local Global

Page 11: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

UVA Autism Initiative

Transformative Research

Developing & Testing New Models

Training & Education

Outreach & Dissemination

Page 12: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Partnering Across Disciplines

Page 13: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Autism Data System• Analysis• Sharing

Autism Research Core• Research• Coordination

Research in Practice • Innovations• Training• Family

Navigation

Catalyzing Discovery

Changing Systems

Equipping Communities

Supporting Transformative Autism Research (STAR)

Page 14: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Autism Data System

Autism Research Core

Research in Practice

STAR Leadership Team

Micah Mazurek

Rose Nevill Bill Therrien

Moira Johnson

Page 15: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Autism Data System

Autism DRIVE

Dan Funk

Aaron Louie

Eleanor Graham

Ke Wang

Data Collection & Storage

Data Sharing & Analysis

Resource Connections

Page 16: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Autism Research Core

Project Coordination

Technical Assistance

Recruitment & Data Collection

ARC

Rose Nevill

Emily Meltzer

Amber Hardin

Wendy Byun

Page 17: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Pilot Studies Awarded: Year 1Missed Early Diagnosis of Autism Related to Non-

Attended Well-Child Checks in Virginia’s Rural Children

Math Talk

Body-Worn Sensors to Identify Functions of Stereotypical

Behaviors for Children with Autism

The Structure of ASD Clinic-Based Instruments: An Innovative Approach

Parent-Child Brain Synchrony in Autism Spectrum Disorders

Therapeutic and diagnostic potential of targeting microRNAs in autism

Page 18: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Pilot Studies Awarded: Year 2Current Behaviors and Barriers/Facilitators to Physical Activity and

Nutrition in Young Adults with ASD

Early Childhood Development of Social

Communication and Reading in Individuals with

Autism

Microglial P2Y12R in Autism Spectrum Disorder

Behaviors

Developing a Multimedia Professional Development

Process For Teachers of Students With Autism

Spectrum Disorders

Page 19: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Research in Practice

Novel Assessments & Interventions

Applied Behavior Analysis

Education & Outreach

Faculty

Bill Therrien

Gail Lovette

Youjia Hua

Emily Solari

Co-developing & testing innovative models of care and training in clinics and community settings

Page 20: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Research in Practice

Clinical Research

Diagnostic Tools & Models

Interdisciplinary Training

Faculty

Jane Hilton

Ellen Davis

Alisa Bahl

Emily Gonzalez

Kate Frazier

Page 21: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

STAR Trainees

Postdoc.Fellows

Erica Rouch

Kate Sadler

Katy Bateman

Matt Zajic

Liz White

Doctoral Students

Sarah Emily Shutz

Kristie Jones

Michelle Menezes

Christina Harkins

Ryan Grimm

Page 22: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Family Navigation

Resource Navigation

Family Support & Education

Connections & Resources

Family Navigators

Janet Seide

Fay Painter

Pending

Pending

Page 23: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Research in Practice Projects

Developing & Testing New Tools

More Efficient Diagnostic Tools

Family-Centered Diagnostic Process

Interview-Informed Behavior Support

Page 24: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Research in Practice Projects

Developing & Testing Interventions

Function-Based Video Self-Modeling

“Snack Talks” Social Skills Intervention

Social Skills Intervention for Girls

Page 25: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Developing & Testing Interventions

Water Safety Project

Enhancing Comfort with Dental Exams

Parent Coaching/Training

Research in Practice Projects

Page 26: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

UVA Team

Local School Teams

Students

Novel Training Models

ECHO Autism: Education

Research in Practice Projects

Page 27: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Outreach & Dissemination

• Community workshops• Online resource database• In-person & virtual trainings• Virginia Autism Research

Consortium (June 17-18)

Page 28: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging

Community Partnerships

Page 29: Supporting Transformative Autism Research (STAR) Initiative · Challenges & Opportunities. Causes & MechanismsDiagnosis & Assessment. Effective Treatments. Health & Well-Leveraging