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.
TRAIN Study
Does your infant or toddler have TSC? Researchers are adapting an established intervention for remote delivery to learn and practice at home! Intervention is provided through videoconferencing, and families are compensated for completing the study.
To learn more about the study, please email us at JASPERforTSC@gmail.com, call/text us at 323-451-1485 or visit our study site.
Watch an informational video about the TRAIN Study.
Rainbow Study
The Remote Assessment and Intervention for Behavior Problems in Kids With TSC (RAINBOW) study is seeking to learn more about behavior problems in young children with tuberous sclerosis complex. The study is looking to enroll children between 3-6 years old whose primary spoken language in the home is English or Spanish, who can live anywhere in the United States.
Learn more about the study from the flyers below or by watching a webinar. For more information please contact Viviana Rodriguez at vivianarodriguez@mednet.ucla.edu or (424)326-3118.
Regulating Together in Tuberous Sclerosis Complex
The objective of this study is to identify and characterize emotion dysregulation in TSC children and adolescents with TSC-Associated Neuropsychiatric Disorder (TAND) who exhibit interfering, difficult to manage behaviors and symptoms and to optimize Regulating Together for treatment of emotion dysregulation in TSC. The program involves remote-based, small group interactions with children ages 8-18 years. We are enrolling children with TSC, ages 8-18, and their caregivers to evaluate a behavioral intervention to help with emotion dysregulation. The behavioral intervention consists of 5 weeks of twice weekly group therapy for the children followed by separate caregiver sessions all delivered remotely. This would be followed by an individual consultation with the psychologist and subsequent 10-week period to practice skills learned during treatment.
To learn more about the study contact Julia Flynn at TSCResearch@cchmc.org, using the subject line: RT-TSC.
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.
