Tuberous Sclerosis Complex Autism Center of Excellence Research Network (TACERN)
TACERN was a multicentre study that investigated the underlying mechanisms of Autism Spectrum Disorder (ASD) in Tuberous Sclerosis Complex (TSC). Beginning in 2012, the study recruited around 160 children with TSC between the ages of 3 and 12 months from five TSC centres across the United States of America. Participants were assessed at baseline and repeatedly until 36 months.
Study design
Cohort - clinical, Cohort
Number of participants at first data collection
162 (participants)
Age at first data collection
3 - 12 months (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
2012
Primary Institutions
Children's Hospital Boston (now known as Boston Children's Hospital)
Cincinnati Children's Hospital Medical Center (CCHMC)
University of Alabama at Birmingham (UAB)
University of California, Los Angeles (UCLA)
University of Texas Health Science Center at Houston (UTHealth Houston)
Profile paper DOI
Funders
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Center for Advancing Translational Sciences (NCATS)
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)
Ongoing?
No
Data types collected
- Audio or visual recordings (e.g. of child behaviour, facial expressions)
- Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
- Interview – face-to-face
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Secondary data
- Self-report questionnaire – paper or computer assisted
- None
- Electroencephalography (EEG)
- Magnetic Resonance Imaging (MRI)
- Healthcare data
Engagement
Keywords
Consortia and dataset groups
