Closing the Gap to Interventions for Tuberous Sclerosis Complex–Associated Neuropsychiatric Disorders (TAND): Protocol for a Longitudinal Study of TAND Severity, Predictors, and Caregiver Well-Being (TANDem-2)

Petrus J de Vries   ¹ , MBChB, FRCPsych, PhD ;   Nola Chambers   ¹ , PhD ;   Erin Campbell   ¹ , MBChB ;   Lucas Gutierrez-Lafrentz   ^{2, 3} , MD ;   Tosca-Marie Heunis   ³ , PhD ;   Liezl Schlebusch   ¹ , PhD ;   Guillaume Beaure d'Augères   ⁴ , MSc ;   Stacey Bissell   ⁵ , PhD ;   Anna Byars   ^{6, 7} , PhD ;   Jamie Capal   ^{6, 8} , MD ;   Laís Cardozo   ⁹ , PhD ;   Sebastian Cukier   ¹⁰ , MD ;   Peter Davis   ¹¹ , MD ;   Naomi Beth Epstein   ¹² , MA ;   Carla Fladrowski   ^{13, 14} , BSc ;   Jennifer Flinn   ¹⁵ , EdD ;   Tanjala Gipson   ^{16, 17} , MD ;   Sarah Louise Goy   ^{18, 19} , MA ;   John Christopher Kingswood   ²⁰ , FRCP, MSc ;   Darcy Krueger   ^{8, 21} , PhD ;   Francesca Little   ^{22, 23} , PhD ;   Sugnet Lubbe   ²⁴ , PhD ;   Rebecca Mitchell   ²⁵ , PhD ;   Micaela Rozenberg   ^{14, 26} , DipHE ;   Mustafa Sahin   ^{11, 27} , MD-PhD ;   Mitchell Silva   ²⁸ , PhD ;   Catherine Smith   ²⁹ , BA ;   Shoba Srivastava   ^{1, 30} , PhD ;   Megumi Takei   ¹² , BA ;   Agnies van Eeghen   ^{31, 32} , PhD ;   Mary Vasseghi   ^{33, 34} , PhD ;   Jan-Paul Wagenaar   ³⁵ , MSc ;   Robert Waltereit   ^{36, 37, 38} , MD ;   Liesbeth De Waele   ^{39, 40} , MD, PhD ;   Anna C Jansen   ^{3, 41, 42} , MD, PhD

¹ Centre for Autism Research in Africa, Division of Child and Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa

² Department of Philosophy, Faculty of Art, University of Antwerp, Antwerp, Belgium

³ Mental Health and Wellbeing Research Group, Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Brussel, Belgium

⁴ Association TSC Bourneville France, Angers, France

⁵ School of Psychology, University of Birmingham, Birmingham, United Kingdom

⁶ Division of Neurology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

⁷ College of Medicine, University of Cincinnati, Cincinnati, OH, United States

⁸ Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, OH, United States

⁹ Department of Psychology, Universidade Federal do Paraná, Curitiba, Paraná, Brazil

¹⁰ Department of Psychopathology and Mental Health, Hospital Pedro de Elizalde, Buenos Aires, Argentina

¹¹ Department of Neurology, Boston Children's Hospital, Boston, MA, United States

¹² Japanese Society of Tuberous Sclerosis Complex, Tokyo, Japan

¹³ Associazione Sclerosi Tuberosa APS, ETS, Rome, Italy

¹⁴ European Tuberous Sclerosis Complex Association, Wiesbaden, Germany

¹⁵ TSC Canada, Mississauga, ON, Canada

¹⁶ Department of Pediatrics, University of Tennessee Health Science Center, Memphis, TN, United States

¹⁷ The Boling Center for Developmental Disabilities, Le Bonheur Children's Hospital, Memphis, TN, United States

¹⁸ Rare Disease Research UK, London, United Kingdom

¹⁹ Patient Research Network, Tuberous Sclerosis Association, London, United Kingdom

²⁰ Department of Clinical Genetics, St George's University Hospital, London, United Kingdom

²¹ TSC Clinic, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

²² Nuffield Department of Primary Care Health Sciences, Medical Sciences Division, University of Oxford, Oxford, United Kingdom

²³ Department of Statistical Sciences, University of Cape Town, Cape Town, South Africa

²⁴ MuViSU (Centre for Multi-Dimensional Data Visualisation), Department of Statistics and Actuarial Sciences, Stellenbosch University, Stellenbosch, South Africa

²⁵ Clinical Neurosciences, Murdoch Children's Research Institute, Melbourne, Victoria, Australia

²⁶ Associação de Esclerose Tuberosa em Portugal, Lisbon, Portugal

²⁷ Rosamund Stone Zander Translational Neuroscience Center, Boston Children's Hospital, Boston, MA, United States

²⁸ Esperity, Brussels, Belgium

²⁹ TSC Alliance, Silver Springs, MD, United States

³⁰ Society of Parents of Children with Autistic Disorders (SOPAN), Mumbai, India

³¹ Emma Children’s Hospital, Amsterdam University Medical Centers, Amsterdam, The Netherlands

³² TAND Expert Centre, 's Heeren Loo, Noordwijk, The Netherlands

³³ TSC Ireland, Dublin, Ireland

³⁴ School of Medicine, Trinity College Dublin, Dublin, Ireland

³⁵ Stichting Tubereuze Sclerosis Nederland (STSN), Volendam, The Netherlands

³⁶ LWL-University Hospital Hamm for Child and Adolescent Psychiatry, Ruhr University Bochum, Hamm, Germany

³⁷ Department of Psychiatry, Psychotherapy and Preventive Medicine, LWL-University Hospital, Ruhr University Bochum, Bochum, Germany

³⁸ Child and Adolescent Psychiatry, LWL-Klinikum Marsberg, Marsberg, Germany

³⁹ Department of Paediatric Neurology, University Hospitals Leuven, Leuven, Belgium

⁴⁰ Department of Development and Regeneration, KU Leuven, Leuven, Belgium

⁴¹ Department of Pediatrics, Koningin Mathilde Moeder- en Kindcentrum, Antwerp University Hospital, Antwerp, Belgium

⁴² Department of Translational Neurosciences, University of Antwerp, Antwerp, Belgium