Developmental and Behavioral Research
Interested in Participating in Future Studies?
Developmental and Behavioral Pediatrics is continually adding to our list of current studies. We are often looking for children with autism spectrum disorder and their families to participate in a variety of research projects. We invite you to provide your information in our secure database so that we may contact you and your family about future opportunities.
Current Studies
AIR-B
Principal Investigator: Suzannah Iadarola, Ph.D.
Co-Principal Investigator: Lynne Levato, Ph.D.
Funded by: United States Health Resources and Services Administration (HRSA)
Lead site: University of California Los Angeles (Kasari).
There are clear diagnostic and service disparities in autism spectrum disorder (ASD) for children from low-income/rural households and children of color. The Autism Intervention Research Network on Behavioral Health (AIR-B) is a network of researchers seeking to make sure that evidence-based behavioral interventions are effective and available for all children with ASD in our communities. Our work has focused on: language interventions, programs to help promote social relationships in schools, school-based transitions, and programs to support parents following a first diagnosis. All research activities are conducted in collaboration with our community partnership.
Contact for Questions
Samantha Hochheimer
(585) 276-6465
ALHN
Principal Investigators: Lynn Cole, N.P., and Susan L. Hyman, M.D.
Funded by: Autism Speaks
Improving global health and quality of life for children with autism spectrum disorder
Children with autism spectrum disorder face many barriers in accessing appropriate health care. To improve this requires enhancing the understanding clinicians have of family and patient needs and improvement of the evidence base that inform medical and behavioral care. The purpose of this study is to contribute family and clinical experiential data to the AHLN research network and use this information to impact clinical care locally. This project is intended to use quality improvement approaches to address health services, and outcomes for individuals with autism spectrum disorders.
Contact for Questions
Claudia Perez
(585) 273-3073
Learn More and Apply »
Computational Linguistics
Principal Investigator: Laura Silverman, Ph.D.
Funded by: National Institute on Deafness and Other Communication Disorders (NIDCD) of the National Institutes of Health
Lead site: University of Rochester
The social use of language, which is called pragmatic language, has been difficult to study in the lab because research labs tend to be more sterile and controlled than real world social settings. As a result, there is still a lot to learn about pragmatic language abilities in ASD, and the impact of these abilities on everyday life.
In our study, we set up natural, conversational situations so that we can better understand everyday language use in high-functioning adults with ASD and adults with typical development. We also assess other features of language and thinking abilities more broadly. We then apply novel automated computational language analysis techniques to these data, and existing data from children and adolescents with ASD, to reveal distinctive features of pragmatic language use in ASD. This study is designed to both characterize language abilities in ASD, and to inform interventions that could improve social interaction and communication skills in adults with ASD in the future.
This work is a collaboration among researchers in computer science, psychology, and linguistics at Boston College, University of Rochester, and Rochester Institute of Technology. The project is supported in part by the National Institute on Deafness and Other Communication Disorders (NIDCD) of the National Institutes of Health under award number R21DC017000.
Computational Linguistics Website
Contact for Questions
Sarah Farash
(585) 275-0953
DOH Support for CYSHCN
Principal Investigator: Susan Hetherington, Ph.D.
Funded by: NYS Department of Health
Lead site: Einstein-Montifiore, Rose F. Kennedy UCEDD
This project is a collaboarative effort betwee n The Strong Center for Developmental Disabilities and 28 Local County Health Departments across NYS. The mission of this project is to positively impact the lives of Children and Youth with Special Health Care Needs (CYSHCN) and their families by assisting Local Health Departments (LHDs) in providing needed and appropriate services. The deliverables for this project are technical assistance to local health departments and completion of education materials and a online resource guide for families.
Contact for Questions
Sabrina Smith, MPA
(585) 275-3378
ECHO Programs
Principal Investigator: Susan L. Hyman, M.D.
The Extension for Community Healthcare Outcomes (ECHO®) is an innovative model that was developed by Dr. Sanjeev Arora at the University of New Mexico. The mission of ECHO is to improve the care received by people across the lifespan by providing community-based clinicians with skills and knowledge to treat complex patients in their own practices. ECHO aims to improve health outcomes while reducing geographic barriers and the cost of care through a multidisciplinary team-based approach.
ECHO Autism & Developmental Disorders
ECHO Autism & DD is a virtual learning network of medical providers that allows for real-time access to experts in autism and other developmental disorders. This ECHO aims to support pediatric & family medicine primary care teams in Western New York in the care of children and youth with autism and other developmental disorders through telementoring and case-based learning.
To learn more about ECHO Autism, please visit: https://www.urmc.rochester.edu/institute-innovative-education/center-experiential-learning/urmc-project-echo/echo-programs/autism-developmental-disorders.aspx
Contact for Questions
Claudia Perez
(585) 273-3073
ECHO FASD
Fetal alcohol spectrum disorders (FASD) are common developmental disabilities that can occur when there is alcohol exposure during pregnancy. FASD affects learning and behavior as well as many aspects of physical health.
ECHO FASD has been developed to bridge the care gap between FASD specialists, community health care providers, and children with FASD and their families. ECHO FASD gives community professionals knowledge and mentorship to care for patients with FASD close to home, and uses an evidence-based approach to move knowledge, not people.
Contact for Questions
To learn more about ECHO FASD, please visit: https://www.urmc.rochester.edu/strong-center-developmental-disabilities/programs/echo-fasd.aspx
ECHO for Mental Health in ASD
Autism ECHO for mental health uses video conferencing to create a knowledge network among mental health providers around Autism Spectrum Disorders. Sessions are 60minutes and include didactics and case presentations aimed at improving supports and interventions for clients with ASD and co-occurring mental health concerns. It also provides troubleshooting to mental health providers in operating with increased independence and self-efficacy.
Contact for Questions
RRCASD@urmc.rochester.edu
FASD Interventions
Families Moving Forward (FMF) Connect
Principal Investigators: Christie Petrenko, Ph.D. & Cristiano Tapparello, Ph.D.
Funded by: National Institute on Alcohol Abuse and Alcoholism
Although fetal alcohol spectrum disorders (FASD) are prevalent in the US, very few providers are knowledgeable about these conditions and evidence-based care is very limited. The aim of this project is to develop and test a new mobile health intervention to help families raising children with FASD. Through an app on their smartphones, caregivers will be able to access information and tools that can help them learn new skills to manage their children’s behavior. They will also be able to connect with other caregivers for support and to share ideas. The app, called FMF Connect, is based on the scientifically validated Families Moving Forward (FMF) Program.
Trials are ongoing. Visit the study website to learn more: www.fmfconnect.com
Contact for Questions
Project Coordinator: Alicia Roth, (585) 275-2991 x 334
My Health Coach
Principal Investigators: Christie Petrenko, Ph.D. & Cristiano Tapparello, Ph.D.
Funded by: National Institute on Alcohol Abuse and Alcoholism
Adults with FASD experience many barriers to care. Research on the effects of prenatal alcohol exposure during adulthood is limited and few providers have the knowledge and skills to effectively serve this population. Adults with FASD need reliable and accessible information to inform decision making about their health and well-being. Innovative and scalable solutions are needed. This project aims to meet this need by developing a novel mobile health (mHealth) application (“app”), currently called “My Health Coach,” to directly provide adults with FASD evidence-based education about their condition and tools to promote their own self-management and health advocacy goals. The app is being co-developed with an advisory board of adults with FASD. Additional refinements will be made after focus groups and surveys with adults with FASD. The My Health Coach app will be testing in a randomized controlled trial.
Contact for Questions
Research Assistant: Emily Speybroeck, (585) 275-2991 x 339
Tuning in to Kids
Principal Investigators: Christie Petrenko, Ph.D.
Funded by: National Institute on Alcohol Abuse and Alcoholism
This study will test the Tuning in to Kids (TIK) intervention with families raising children with FASD. TIK is an eight-week group intervention for parents. It teaches parents effective ways to respond to their children’s emotions, using what is called an “emotion coaching” approach. The aim of this approach is to improve children’s emotion regulation skills and reduce behavior problems. This study will be the first to test whether TIK is helpful for families raising children with special needs, particularly those with FASD.
Contact for Questions
Research Assistant: Rebecca Wittlin, (585) 275-2991 x 219
ISOLDE (DOD EIBI compared to Modular ABA)
Principal Investigator: Susan L. Hyman, M.D., Scientific Lead Cythia Johnson, PhD (Cleveland Clinic Foundation), Site PIs Cynthia Anderson, PhD (May Institute), Eric Butter, PhD (Nationwide Children’s Hospital), Zachary Warren, PhD (Vanderbilt University Medical Center)
Funded by: Department of Defence
Lead site: University of Rochester (not actively recruiting)
In this multisite randomized clinical trial, two different intervention approaches – conventional Early Intense Behavioral Intervention (EIBI) and a Modified ABA (MABA) – will be compared to explore possible changes in adaptive behavior for children with ASD. Recruiting sites are seeking military families with TRICARE insurance and children with ASD aged 18 months to 5 years old. This trial will provide treatment to the children for 24 weeks, and examine child and parent outcomes throughout the 24 weeks and up to 90 weeks after intervention. For more information about this trial and sites that are actively recruiting, please go to clinicaltrials.gov (Study NCT04078061).
Contact for Questions
Samantha Hochheimer
(585) 276-6465
MAAPS
Program for educators to help support students with autism in elementary school classrooms.
Principal Investigator: Suzannah Iadarola, Ph.D.
Funded by: Institute for Education Sciences
Lead site: May Institute (Anderson)
There are many evidence-based strategies to help support students in public school classrooms, but it can be difficult to select and combine them in the optimal way. Modular Approach to Autism Programs in Schools (MAAPS) offers a framework for identifying the most important student goals and developing interventions to support progress. We work directly with teachers and other educators through this process.
Contact for Questions
Samantha Hochheimer
(585) 276-6465
PRISM
Interventions to help young children with autism use spoken language.
Principal Investigator: Suzannah Iadarola, Ph.D.
Co-Principal Investigator: Lynne Levato, Ph.D.
Funded by: Eunice K. Shriver National Institute of Child Health and Human Development (NIHCD)
Lead site: University of California Los Angeles
Using spoken language early in life is associated with other language, social, and play outcomes for children with ASD. Programs to help young children learn language may include adult-directed and more play-based approaches. The Personalized Response Interventions Sequences for Minimally Verbal Children with ASD (PRISM) study compares two approaches to teaching language for preschool-aged children.
Contact for Questions
Claudia Perez
(585) 273-3073
Sensory Perception in Autism Spectrum Disorders
Principal Investigator: John Foxe, Ph.D. and Edward Freedman, Ph.D.
DBP Collaborator: Emily Knight, M.D.
Funded by: Harry T. Mangurian Foundation
The cognitive neurophysiology lab is conducting studies to try to understand how the brain processes sights, sounds, and touch in individuals with and without autism. We use many different techniques including tracking eye movements, measuring brain waves with EEG, and taking pictures of the brain with MRI. We also test thinking and language skills. We have different opportunities for children and adults of different ages and developmental levels.
EEG Research Roundup | Recruitment Flyer | Website
Contact for Questions
Email to learn more about how you can become involved.
STEP Project
Principal Investigator: Suzannah Iadarola, Ph.D.
Funded by: Administration on Community Living
70% of people accessing employment services in New York through the Office of People with Developmental Disabilities (OPWDD) are participating in day habilitation programs. The Successful Transition to Employment (STEP) Project’s overarching goal is to create a transition system that better supports people with intellectual and developmental disabilities (I/DD) moving from day habilitation settings to competitive, integrated employment.
Our team has convened a multi-stakeholder participatory collaborative that will conduct a comprehensive review and analysis of employment service system policies and practices across New York State. This work will lead to the development of programmatic interventions and proposed policy changes. Our core partners are the OPWDD, Heritage Christian Services, the Self-Advocacy Association of New York State (SANYS), the Developmental Disabilities Planning Council (DDPC), and Disability Rights New York (DRNY).
The STEP Project will rely on input from stakeholders in the community. Are you or someone you know interested in joining the partnership and voicing your ideas? Contact Kaitlyn Jackson to learn more about how you can become involved.
Contact for Questions
Kaitlyn Jackson
(585) 276-6449
Vision and Body Awareness Virtual Reality Study
Principal Investigators: Duje Tadin, Ph.D.
DBP Collaborator: Emily Knight, M.D.
Funded by: The Child Neurology Foundation
We are studying interactions between vision and awareness of the body in space. We ask children to do different tasks like estimating their ability to reach across a table, wearing a blindfold to test vision in low-light conditions, and making visual judgments in virtual reality. We also test thinking and language skills. This study recruits children ages of 9 to 17 with or without autism. To participate in the study, a child will be asked to follow some simple instructions and must have average or above average cognitive (thinking) ability.
Recruitment Flyer
Contact for Questions
vision@cvs.rochester.edu to learn more about how you can become involved.