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?
Clinician Diagnostic Certainty and the Role of the Autism Diagnostic Observation Schedule in Autism Spectrum Disorder Diagnosis in Young Children
This study explores a different test doctors use to diagnose autism to see if it’s possible to simplify and shorten the testing process for children. This study enrolled children aged 18 months to 5 years that showed signs of autism to see if the Autism Diagnostic Observation Schedule (ADOS) assessment is useful; doctors use this test regularly to figure out if children have autism. However, it does take about a half hour to do and additional time to interpret, adding time to visits, and requires specialized training. In this study, we discovered that 90% of the time the doctor’s clinical diagnosis matched the diagnosis provided by the test. This suggests that ADOS may not be needed to diagnose autism in young children, and that specialists should mostly use this test to identify children with autism if the diagnosis isn’t clear.
Click here for the full article
Is Developmental Regression in Down Syndrome Linked to Life Stressors?
Development of a Multidisciplinary Clinical Approach for Unexplained Regression in Down Syndrome
A very small number of individuals with Down syndrome (DS) experience losing previously acquired language, social, academic and adaptive skills, a condition called Unexplained Regression in Down Syndrome (URDS). URDS is still a poorly understood condition with no clear cause. In this study, we looked at life events that can stress which are called psychosocial stressors as a possible trigger for URDS. This study looked at 14 patients ranging from 7-21 years old seen at the Boston Children's Hospital Down Syndrome Program over the past 10 years, who all experienced regression with decline in their abilities across different areas of their lives. All had at least one major life stressor in the year before regression and some experienced multiple stressors. The most common stressor found was changes in school. More research is needed to understand why stressors cause a decline in some children with DS but not others.
Our Down Syndrome Program uses a multidisciplinary team approach to diagnose and treat regression in Down syndrome. We collaborate with clinicians and researchers in Neuroimmunology and Psychiatry to establish standardized ways to approach this poorly understood condition and to develop best practices to improve care. Click on this link to learn more about the current research being done by our Down Syndrome Program.
Click here for the full article on life stressors
Click here for the full article on the clinical approach
Population-Based Psychiatric Comorbidity in Children and Adolescents with Autism Spectrum Disorder: A Meta-Analysis
Children with autism are likely to have other conditions as well, which doctors call “comorbidities.” It is important to look out for these co-occurring conditions for a few reasons. Families may need support from doctors because multiple conditions can make it harder to figure out which medications and treatments will work best. In patients with autism, we often see a wide range of overlapping disorders like anxiety, mood, ADHD, intellectual developmental, and sleeping difficulties. Researchers looked at 39 past studies of co-occurring conditions with autism. Some of the noteworthy estimated the rates of co-occurring conditions with autism are 22.9% for intellectual disability, 26.2% for ADHD, and 19.7% for sleep disorders. More research is needed to help doctors provide better care and increase understanding of when and how these co-occurring conditions happen.
Click here for the full article
Association of Screening and Brief Intervention with Substance Use in Massachusetts Middle and High Schools
In Massachusetts, school-based screening and intervention programs are mandatory in the hopes of reducing substance abuse in adolescents. In order to measure the effectiveness of these programs, we conducted a study that involved 4587 students in grades 7 through 10 in Massachusetts. These students completed two private surveys; one before and one 3 months after the implementation of the program. They also received counseling interventions or treatment within those 3 months. The surveys asked about how much alcohol, cannabis, and e-cigarettes students used. Middle schoolers who participated had a reduction in the rate of cannabis use. Girls of all ages also had a reduction in the rates of cannabis, as well as reduced e-cigarette use. This study’s findings suggest that school-based programs can help reduce substance use among middle school and female students. Further study is needed to understand how to better reach boys, and to find out why girls had a better response to the program.