Down Syndrome Program | Research & Innovation

To learn more about a current study, please contact the research staff listed below:

JASPER in Down syndrome

What is JASPER?

JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) is a behavioral intervention designed to teach young children the skills of joint engagement (social interaction with others), joint attention (paying attention to the same thing at the same time as another person) and play.

Who can participate?

Children with Down syndrome age 3 years old

What does participation consist of? 

The study takes place over 6 months and involves 12 visits to Boston Children’s Hospital for intervention sessions, developmental testing, EEG (brain wave) testing, and parent surveys.

Contact us

Down Syndrome Program research coordinator Maggie at downsyndrome.research@childrens.harvard.edu or 617-919-6435.

SPARK for autism

What is SPARK for autism?

SPARK, sponsored by the Simons Foundation Autism Research Initiative, has the mission of speeding up research and advancing understanding of autism by building the nation’s largest autism study! By dramatically increasing the number of research participants, SPARK aims to help facilitate research that has not yet been possible.

Who can participate?

Any individual with a diagnosed autism spectrum disorder, and their biological family members

What does participation consist of?

Participation in SPARK can be done entirely at home—registration can be completed online and the DNA sample can be provided using a saliva collection kit mailed to the home.

Contact us

The SPARK research team at SPARK@childrens.harvard.edu or 617-355-8300. Enrollment can also be done from home at SPARKforAutism.org/BCH!

Upcoming collaborations:

  • Researchers in the Labs of Cognitive Neuroscience will study the development of language and social behavior in individuals with Down syndrome
  • Researchers in Cardiology and Neurology are developing new studies for individuals with Down syndrome of all ages

Stay tuned for more information about these studies!

Other research updates

For more information about any of the studies listed below, please contact Down Syndrome Program research coordinator Maggie at downsyndrome.research@childrens.harvard.edu or 617-919-6435.

DSFit

DSFit is a research pilot program that teaches a home-based exercise program to adolescents with Down syndrome. There is also an optional component of the program which assesses the impact of the exercise program on fitness and symptoms of anxiety and depression. The program is free of charge.

Status: A DSFit pilot is currently underway for adolescents with Down syndrome ages 12-17. The program consists of 10 weekly group exercise sessions with trainers at BCH Waltham plus exercise routines for home. Stay tuned for future DSFit opportunities once our pilot is complete!

Parent attitudes towards enhancing cognition and clinical trials

This study explores parent attitudes towards 1) medical/scientific efforts to enhance cognition in individuals with Down syndrome, and 2) clinical drug trials for individuals with Down syndrome. 

Status: We have finished collecting data from parents of individuals (of any age) with Down syndrome via surveys, phone interviews and a focus group. We are currently in the data analysis stage.

Roche clinical trial

This clinical trial was a randomized, double-blind, placebo-controlled PK study of a RO5186582 medication in children with Down syndrome ages 6-11. The focus of the trial was cognition enhancement.

Status: This trial ran from 2015 – 2017.

Quality improvement

The DSP has various projects in place behind the scenes to improve quality of care for the hundreds of patients and families that we interact with each year! Currently these projects focus on standardizing how we collect patient information from parents/families and providers through new electronic surveys and intake forms. These initiatives will enable us to learn more about development, behavior, and medical conditions over time in individuals with Down syndrome and to improve our clinical care.