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

SPARK for Autism Research Study, Boston Children’s Hospital

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 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 Emily Matthews, Clinical Research Coordinator at: SPARK@childrens.harvard.edu or call (617) 355-8300.

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are looking for families who have a child less than 3 years old and is diagnosed with TSC.

The study is expected to help identify children who will benefit from intervention very early in development when treatment is known to have the greatest impact. Participating families will receive developmental feedback reports at 1, 2, and 3 years old, close developmental monitoring of their newborn, and free early intervention if there are signs of developmental delay.

There is no cost to participate in this study and medical insurance is not required. Families will receive valuable feedback on their infant’s developmental progress, as well as $50 for each study visit.  For more information, please contact us at (310) 825-3478 or enosco@mednet.ucla.edu .