TSC Matters

Ongoing Early Intervention and Autism trials

See below for ongoing trials.

Baby Talk in TSC

Why are we doing this study?

Our team is investigating how TSC impacts a baby’s speech. The study is focused on examining the vocalizations and early language of infants with TSC.

What: In this study, we will obtain and analyze recordings of your child’s babbling and speech. The majority of the recordings will be obtained in your home using a small recorder placed in your child’s clothing (home recordings). In some cases, recordings will be obtained in an office/laboratory setting either at the University of Memphis or at Le Bonheur Children’s Hospital. We will also give speech and language tests, ask you to complete developmental questionnaires, and we will analyze neurodevelopmental tests that are often completed as a part of clinical care for TSC.

Who: Your child must be a newborn to 36 months old.

Please contact us if you’re interested in participating in our study, please contact Study Coordinator Lauren Davis by phone at 901-287-4594 or by e-mail: Lauren.davis2@lebonheur.org.

SPARK for Autism Research Study

Boston Children’s Hospital would like to invite individuals of all ages diagnosed with autism as well as their family members to join SPARK!  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!    Registration and information can be found online at www.SPARKforAUTISM.org/BCH.   Individuals with autism will receive gift cards valued at up to a total of $50 for participation. By dramatically increasing the number of research participants, SPARK aims to help facilitate research that has not yet been possible.

Questions? Contact the SPARK team at Boston Children’s Hospital at: SPARK@childrens.harvard.edu or call (617) 355-8300.

The Learning Brain Study at Boston Children’s Hospital

Researchers at Boston Children’s Hospital are currently enrolling kids ages 2-12 with a diagnosis of TSC to participate in The Learning Brain Study!

In collaboration with MIT, the goal of the study is to further understand how the brain changes as it learns. By gaining insight into how the brain changes with experience, they aim to improve identification methods for children with TSC and other neurodevelopmental disorders.

Participation includes three consecutive visits (20-30min each) to the Labs of Cognitive Neuroscience at Boston Children’s Hospital. Visits will consist of safe and non-intrusive methods of brain activity measurements.

Participants receive $50 as a thank you for your time. Boston Children’s Hospital also provides free parking, childcare, and can cover travel and accommodation costs.

Please email learningbrainstudy@childrens.harvard.edu or call (617) 893-3749 for more information.