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For Families | Overview


Centralized Recruitment Initiative

If your family is seen in our Developmental Medicine Center, you may be contacted about research opportunities around the time of your visit. Joining a research study is completely optional. We want to let you know about all studies in case you are interested. If you are, we will connect you with the research teams.

Meet the study coordinators who work on the Centralized Recruitment Project on our Research Team page. You may see them in clinic or talk to them on the phone. Come say hello! We would love to talk to you about our research!

Social Stories

Social Stories are a learning tool that uses pictures and words to help kids (and parents!) prepare for new experiences. Our study teams have put together social stories specifically for our families participating in research. The stories take you through the steps of a study’s visits, so your child can learn about who they will be meeting and what they will be doing during the study.

To use the social story, we recommend reading it with your child a few times a week leading up to the study visit. Our goal is to make study visits as successful as possible! Clinical versions of social stories, for example about planning your trip to give a blood sample, are available too, on the My Hospital Stories page.

Looking for clinical resources? Please visit our Developmental Medicine Center page.


What have we learned from research?

A Phone Consultation Call Line to Support SBIRT in Pediatric Primary Care

The state of Massachusetts created a call line staffed by pediatric Addiction Medicine specialists to provide pediatricians with access to support in managing adolescent drug and alcohol use in the primary care setting. If needed, adolescents could be referred directly to virtual counseling, focused on addressing substance use. The most common substances mentioned by healthcare providers were cannabis (64%), nicotine (20%), alcohol (20%), vaping (9%), and opioids (5%). This study suggests that a call line providing virtual counseling and supporting Screening Brief Intervention Referral to Treatment (SBIRT) in pediatric primary care would be useful pediatric providers and to teens and their families.

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Beyond Group Differences: Exploring the Preliminary Signals of Target Engagement for an Executive Function Training for Autistic Children

This study enrolled 7- to 11-year-old autistic children to see if computer-based games designed to improve thinking skills improved the child’s ability to complete problem solving tasks and reduced autism features related to restricted and repetitive behavior. In our study, we looked at whether children with more behaviors related to attention-deficit/hyperactivity disorder (ADHD) or anxiety benefited more from the training. We also looked at whether children's brain-based changes from the program predicted parent reported changes in restricted and repetitive behaviors. We found that the computer games improved children's self-control – specifically the ability to stop a response – but only in the subgroup with clinically significant ADHD behaviors. Anxiety levels were not related to how well the computer training worked. Within the entire group of autistic children who received training, we also found that the degree of reduction in restricted and repetitive behaviors matched the amount of change in brain responses. This study suggests that computer games focusing thinking skills may have added benefits for some groups of autistic children, especially those with ADHD features.

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Patterns of Intervention Utilization Among School-Aged Children with Autism Spectrum Disorder: Findings from a Multi-Site Research Consortium

In this study, caregivers of 6-to-11-year-olds on the autism spectrum at five locations in the United States were interviewed about the types and amounts of intervention (treatments) their child received over a six-week period. Children with more autism features, less ethnic diversity, and who lived in particular states received more hours of interventions with research support. Parents with a higher education level themselves reported their children received more hours of interventions without research support. A larger number of interventions were received by younger children, those with lower developmental levels, and with more autism features. These patterns are important when trying to understand results from studies where a treatment was given, because most children receive a range of other treatments at the same time they participate in research testing new treatments. Our results show that when creating a study where a treatment will be given, researchers should think about autism symptom levels, age, developmental level, ethnicity, parent education, and geographic location.

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Absence of Dynamic Neural Oscillatory Response to Environmental Conditions Marks Childhood Attention Deficit Hyperactivity Disorder

This study builds on previous research suggesting that symptoms of attention deficit hyperactivity disorder (ADHD) and other neurodevelopmental disorders may come from differences in the brain’s ability to sort and prioritize information. In this study, brain activity was measured through EEG (electroencephalography, a measure of electrical signals in the brain). It showed that neurotypical children have changes in brain activity when lights were turned on or off, while children with ADHD had no change when lights were on versus off. This showed that the brains of children with ADHD do not adapt to changing environmental conditions as efficiently as those of other children their age.

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Heritability and Clinical Characteristics of Neuropsychological Profiles in Youth With and Without Elevated ADHD Symptoms

This study examined whether patterns of cognitive strengths and challenges are heritable, meaning that they run in families, by looking at a sample of school-age twins with and without ADHD symptoms. Researchers found that ADHD symptoms run in families more than do specific patterns of cognitive strengths and challenges. The strongest predictor of high ADHD symptoms was a variable pattern of performance on the cognitive tests.

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