@article{5f177438277b49ec87b9d0acaec2fba5,
title = "Impacting development in infants with tuberous sclerosis complex: Multidisciplinary research collaboration",
abstract = "The Tuberous Sclerosis Complex Autism Center of Excellence Network (TACERN) is a 6-site collaborative conducting longitudinal research on infants with tuberous sclerosis complex (TSC), focused on identifying early biomarkers for autism spectrum disorder (ASD). A multidisciplinary research team that includes the specialties of psychology, neurology, pediatrics, medical genetics, and speech-language pathology, its members work together to conduct studies on neurological status, brain structure and function, neurodevelopmental phenotype, and behavioral challenges in this population. This article provides insights into the roles of the multidisciplinary multisite team and lessons learned from the collaboration, in terms of research as well as training of future researchers and clinicians. In addition, the authors detail the major findings to date, including those related to the identification and measurement of early symptoms of ASD, relationship between seizures and early development, and early biomarkers for epilepsy and developmental delay in infants and young children with TSC.",
keywords = "Autism spectrum disorder, Infant, Multidisciplinary research, Neurodevelopment, Tuberous sclerosis complex",
author = "{TACERN Study Group} and Williams, {Marian E.} and Pearson, {Deborah A.} and Capal, {Jamie K.} and Byars, {Anna W.} and Murray, {Donna S.} and Robin Kissinger and O'Kelley, {Sarah E.} and Ellen Hanson and Bing, {Nicole M.} and Bridget Kent and Wu, {Joyce Y.} and Hope Northrup and {Martina Bebin}, E. and Mustafa Sahin and Darcy Krueger and Warfield, {Simon K.} and Peters, {Jurriaan M.} and Monisha Goyal and Rajna Filip-Dhima and Kira Dies and Stephanie Bruns and Benoit Scherrer and Gary Cutter and Roberds, {Steven L.} and Laura Mamounas",
note = "Funding Information: TACERN (Tuberous Sclerosis Complex Autism Center of Excellence Research Network) was supported by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health and the Eunice Kennedy Shriver National Institute of Child Health & Human Development under Award U01NS082320. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We are sincerely indebted to the generosity of the families and patients in tuberous sclerosis complex (TSC) clinics across the United States who contributed their time and effort to this study. We would also like to thank the Tuberous Sclerosis Alliance for its continued support in TSC research. This project was completed in partial fulfillment of the requirements of Robin Kissinger{\textquoteright}s participation in the Clinical Child Psychology Postdoctoral Fellowship at the USC University Center for Excellence in Developmental Disabilities and in the California Leadership Education in Neurodevelopmental Disabilities Interdisciplinary Training Program. Publisher Copyright: {\textcopyright} 2019 American Psychological Association.",
year = "2019",
month = apr,
doi = "10.1037/amp0000436",
language = "English (US)",
volume = "74",
pages = "356--367",
journal = "American Psychologist",
issn = "0003-066X",
publisher = "American Psychological Association Inc.",
number = "3",
}