TSC Matters

Ongoing Early Intervention and Autism Trials

See below for ongoing trials.

JASPER Early intervention for Tuberous Sclerosis – Modified to include video-based intervention

Researchers from Boston and Los Angeles are studying the benefits of early behavioral intervention in infants and toddlers with TSC. Intervention is provided in person and now remotely via video conferencing. This study design allows us to include families from all over the country.

Where: Assessments will take place at UCLA and Boston Children’s Hospital. 4 intervention sessions will take place at the study sites, the rest will occur in your home, through video conferencing.

Principal Investigators: This NIH funded study is led by Shafali Jeste, MD. (UCLA), Connie Kasari, Ph.D. (UCLA), Charles A. Nelson, Ph.D. (Boston Children’s Hospital) and Elizabeth Thiele, MD, Ph.D. (Mass General Hospital)

Who is eligible to participate? Any child with a diagnosis of TSC between the ages of 12-36 months is eligible for the intervention. Children below 57 months may also be eligible for one-time participation in the study.

To learn more about the study, visit www.JETSstudy.org

TSC Remote Intervention Study (TRAIN)

Do you have a child with TSC? FREE REMOTE Intervention Study!

You and your child may be eligible to participate in this research study at the comfort of your home if:

  • Your child has a clinical TSC diagnosis
  • Your child is between 12-36 months of age
  • English is primary language spoken at home
  • Parent is available weekly for remote video conference calls

Participants will receive:

  • Free assessments of communication, cognition, and play
  • Free evidence-based intervention
  • $150 for study completion.

For more information, please email MPizzano@mednet.ucla.edu.

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.

Growing Up With a Sibling on the Autism Spectrum

A researcher is recruiting teens or older individuals for a short one-time Zoom interview about growing up with a sibling on the spectrum. Click this link to download flyer for more information.