Cited by 375Tuberous Sclerosis Complex ResearchGenetic and rare skin diseases.Schizophrenia research and treatment

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Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist

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de Vries, Petrus J., Whittemore, Vicky H., Leclezio, Loren, Byars, Anna W., Dunn, David, Ess, Kevin C., Hook, Dena, King, Bryan H., Sahin, Mustafa, Jansen, Anna·2015·Pediatric Neurology

DOI 10.1016/j.pediatrneurol.2014.10.004PMC PMC4427347

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Abstract

Background Tuberous sclerosis complex is a multisystem genetic disorder with a range of physical manifestations that require evaluation, surveillance, and management. Individuals with tuberous sclerosis complex also have a range of behavioral, psychiatric, intellectual, academic, neuropsychologic, and psychosocial difficulties. These may represent the greatest burden of the disease. Around 90% of individuals with tuberous sclerosis complex will have some of these difficulties during their lifetime, yet only about 20% ever receive evaluation and treatment. The Neuropsychiatry Panel at the 2012 Tuberous Sclerosis Complex International Consensus Conference expressed concern about the significant "treatment gap" and about confusion regarding terminology relating to the biopsychosocial difficulties associated with tuberous sclerosis complex. Methods The Tuberous Sclerosis Complex Neuropsychiatry Panel coined the term TAND-tuberous sclerosis complex-associated neuropsychiatric disorders-to bring together these multidimensional manifestations of the disorder, and recommended annual screening for TAND. In addition, the Panel agreed to develop a TAND Checklist as a guide for screening. Results Here, we present an outline of the conceptualization of TAND, rationale for the structure of the TAND Checklist, and include the full US English version of the TAND Checklist. Conclusion We hope that the unified term TAND and the TAND Checklist will raise awareness of the importance of tuberous sclerosis complex-associated neuropsychiatric disorders and of the major burden of disease associated with it, provide a shared language and a simple tool to describe and evaluate the different levels of TAND, alert clinical teams and families or individuals of the importance of screening, assessment, and treatment of TAND, and provide a shared framework for future studies of tuberous sclerosis complex-associated neuropsychiatric disorders.

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Authors: de Vries, P. J., Whittemore, V. H., Leclezio, L., Byars, A. W., Dunn, D., Ess, K. C., Hook, D., King, B. H., Sahin, M., & Jansen, A.
Affiliations: University of Cape Town (ZA)
National Institutes of Health (US)
Cincinnati Children's Hospital Medical Center (US)
Riley Hospital for Children (US)
Vanderbilt University Medical Center (US)
Seattle Children's Hospital (US)
Vrije Universiteit Brussel (BE)
Corresponding author: de Vries, Petrus J.
ORCID: de Vries, Petrus J.
Whittemore, Vicky H.
Byars, Anna W.
Ess, Kevin C.
King, Bryan H.
Jansen, Anna
Venue: Pediatric Neurology
Publisher: Elsevier BV
Published: 2015-01
Volume: 52
Issue: 1
Pages: 25-35
ISSN: 0887-8994 (ISSN-L)
DOI: 10.1016/j.pediatrneurol.2014.10.004
PMC: PMC4427347
OpenAlex: W2067318667
Cited by: 371
References: 41
Citations by year: 2026: 29 · 2025: 31 · 2024: 33 · 2023: 19 · 2022: 37 · 2021: 50 · 2020: 59 · 2019: 20 · 2018: 27 · 2017: 26 · 2016: 27 · 2015: 12
FWCI: 14.67
Type: journal article
Language: en
Open access: green
www.ncbi.nlm.nih.gov
Licence: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations: Pediatric Neurology (publishedVersion)
PubMed (publishedVersion)
Europe PMC (PubMed Central) (acceptedVersion)
PubMed Central (acceptedVersion)
eScholarship (California Digital Library) (submittedVersion)
VUBIR (Vrije Universiteit Brussel) (submittedVersion)
Funders: NRF
PERC
Struengmann Fund
NIH
Novartis (1U01NS082320-01)
Eli Lilly and Company
Roche
Topics: Health Sciences › Medicine › Genetics (clinical) › Tuberous Sclerosis Complex Research
Health Sciences › Medicine › Dermatology › Genetic and rare skin diseases.
Health Sciences › Medicine › Psychiatry and Mental health › Schizophrenia research and treatment
Keywords: tuberous sclerosis complex, neuropsychiatric disorders, treatment gap, intellectual disability, psychiatric comorbidity, psychosocial problems, terminology standardization
MeSH terms: Adolescent, Adult, Mental Disorders, Brain Diseases, Child, Child, Preschool, Humans, Infant, Terminology as Topic, Pilot Projects, Tuberous Sclerosis, Checklist

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Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist

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