Literature DB >> 30945897

Impacting development in infants with tuberous sclerosis complex: Multidisciplinary research collaboration.

Marian E Williams1, Deborah A Pearson2, Jamie K Capal3, Anna W Byars3, Donna S Murray3, Robin Kissinger4, Sarah E O'Kelley5, Ellen Hanson6, Nicole M Bing3, Bridget Kent3, Joyce Y Wu7, Hope Northrup2, E Martina Bebin5, Mustafa Sahin6, Darcy Krueger3.   

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. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Entities:  

Year:  2019        PMID: 30945897      PMCID: PMC6612428          DOI: 10.1037/amp0000436

Source DB:  PubMed          Journal:  Am Psychol        ISSN: 0003-066X


  36 in total

1.  A multisite study of the clinical diagnosis of different autism spectrum disorders.

Authors:  Catherine Lord; Eva Petkova; Vanessa Hus; Weijin Gan; Feihan Lu; Donna M Martin; Opal Ousley; Lisa Guy; Raphael Bernier; Jennifer Gerdts; Molly Algermissen; Agnes Whitaker; James S Sutcliffe; Zachary Warren; Ami Klin; Celine Saulnier; Ellen Hanson; Rachel Hundley; Judith Piggot; Eric Fombonne; Mandy Steiman; Judith Miles; Stephen M Kanne; Robin P Goin-Kochel; Sarika U Peters; Edwin H Cook; Stephen Guter; Jennifer Tjernagel; Lee Anne Green-Snyder; Somer Bishop; Amy Esler; Katherine Gotham; Rhiannon Luyster; Fiona Miller; Jennifer Olson; Jennifer Richler; Susan Risi
Journal:  Arch Gen Psychiatry       Date:  2011-11-07

2.  Cognitive prognosis of patients with tuberous sclerosis complex.

Authors:  Elisabeth B Winterkorn; Margaret B Pulsifer; Elizabeth A Thiele
Journal:  Neurology       Date:  2007-01-02       Impact factor: 9.910

Review 3.  The science of team science: A review of the empirical evidence and research gaps on collaboration in science.

Authors:  Kara L Hall; Amanda L Vogel; Grace C Huang; Katrina J Serrano; Elise L Rice; Sophia P Tsakraklides; Stephen M Fiore
Journal:  Am Psychol       Date:  2018 May-Jun

4.  Early developmental trajectories associated with ASD in infants with tuberous sclerosis complex.

Authors:  Shafali Spurling Jeste; Joyce Y Wu; Damla Senturk; Kandice Varcin; Jordan Ko; Brigid McCarthy; Christina Shimizu; Kira Dies; Vanessa Vogel-Farley; Mustafa Sahin; Charles A Nelson
Journal:  Neurology       Date:  2014-06-11       Impact factor: 9.910

5.  Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist.

Authors:  Petrus J de Vries; Vicky H Whittemore; Loren Leclezio; Anna W Byars; David Dunn; Kevin C Ess; Dena Hook; Bryan H King; Mustafa Sahin; Anna Jansen
Journal:  Pediatr Neurol       Date:  2014-10-16       Impact factor: 3.372

6.  Genotype/phenotype correlation in 325 individuals referred for a diagnosis of tuberous sclerosis complex in the United States.

Authors:  Kit Sing Au; Aimee T Williams; E Steve Roach; Lori Batchelor; Steven P Sparagana; Mauricio R Delgado; James W Wheless; James E Baumgartner; Benjamin B Roa; Carolyn M Wilson; Teresa K Smith-Knuppel; Min-Yuen C Cheung; Vicky H Whittemore; Terri M King; Hope Northrup
Journal:  Genet Med       Date:  2007-02       Impact factor: 8.822

Review 7.  Management of epilepsy associated with tuberous sclerosis complex (TSC): clinical recommendations.

Authors:  Paolo Curatolo; Sergiusz Jóźwiak; Rima Nabbout
Journal:  Eur J Paediatr Neurol       Date:  2012-06-12       Impact factor: 3.140

8.  The Autism Observation Scale for Infants: scale development and reliability data.

Authors:  Susan E Bryson; Lonnie Zwaigenbaum; Catherine McDermott; Vicki Rombough; Jessica Brian
Journal:  J Autism Dev Disord       Date:  2007-09-14

9.  Characterization of autism in young children with tuberous sclerosis complex.

Authors:  Shafali S Jeste; Mustafa Sahin; Patrick Bolton; George B Ploubidis; Ayla Humphrey
Journal:  J Child Neurol       Date:  2007-12-26       Impact factor: 1.987

10.  Does Interdisciplinary Research Lead to Higher Citation Impact? The Different Effect of Proximal and Distal Interdisciplinarity.

Authors:  Alfredo Yegros-Yegros; Ismael Rafols; Pablo D'Este
Journal:  PLoS One       Date:  2015-08-12       Impact factor: 3.240

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  5 in total

1.  Resting-State fMRI Networks in Children with Tuberous Sclerosis Complex.

Authors:  Banu Ahtam; Mathieu Dehaes; Danielle D Sliva; Jurriaan M Peters; Darcy A Krueger; Elizabeth Martina Bebin; Hope Northrup; Joyce Y Wu; Simon K Warfield; Mustafa Sahin; Patricia Ellen Grant
Journal:  J Neuroimaging       Date:  2019-07-14       Impact factor: 2.486

Review 2.  Beyond Baby Siblings-Expanding the Definition of "High-Risk Infants" in Autism Research.

Authors:  Nicole M McDonald; Shafali S Jeste
Journal:  Curr Psychiatry Rep       Date:  2021-04-16       Impact factor: 5.285

Review 3.  A critical realist synthesis of cross-disciplinary health policy and systems research: defining characteristic features, developing an evaluation framework and identifying challenges.

Authors:  Gordon Dugle; Joseph Kwame Wulifan; John Paul Tanyeh; Wilm Quentin
Journal:  Health Res Policy Syst       Date:  2020-07-14

4.  Influence of Early Multidisciplinary Collaboration on Prevention of ICU-Acquired Weakness in Critically Ill Patients.

Authors:  Bolan Wang; Xiqiang He; Shujun Tian; Can Feng; Wenbin Feng; Limin Song
Journal:  Dis Markers       Date:  2022-07-30       Impact factor: 3.464

5.  Language predictors of autism spectrum disorder in young children with tuberous sclerosis complex.

Authors:  Alexandra Schoenberger; Jamie K Capal; Annie Ondracek; Paul S Horn; Donna Murray; Anna Weber Byars; Deborah A Pearson; Marian E Williams; Martina Bebin; Hope Northrup; Joyce Y Wu; Mustafa Sahin; Darcy A Krueger
Journal:  Epilepsy Behav       Date:  2019-12-18       Impact factor: 3.337

  5 in total

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