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Chapter 6162References1. Northrup H, Krueger DA, Roberds S, Smith K, Sampson J, Korf B, et al. Tuberous sclerosis complex diagnostic criteria update: Recommendations of the 2012 international tuberous sclerosis complex consensus conference. Pediatr Neurol. 2013. 2. Northrup H, Aronow ME, Bebin EM, Bissler J, Darling TN, de Vries PJ, et al. Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations. Pediatr Neurol. 2021;123. 3. Curatolo P, Moavero R, de Vries PJ. Neurological and neuropsychiatric aspects of tuberous sclerosis complex. The Lancet Neurology. 2015. 4. De Vries PJ, Whittemore VH, Leclezio L, Byars AW, Dunn D, Ess KC, et al. Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND checklist. Pediatr Neurol. 2015. 5. Vanclooster S, Bissell S, van Eeghen AM, Chambers N, De Waele L, Byars AW, et al. The research landscape of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND)—a comprehensive scoping review. Vol. 14, Journal of Neurodevelopmental Disorders. 2022. 6. Vergeer M, de Ranitz-Greven WL, Neary MP, Ionescu-Ittu R, Emond B, Sheng Duh M, et al. Epilepsy, impaired functioning, and quality of life in patients with tuberous sclerosis complex. Epilepsia Open. 2019;4(4). 7. Van Heijst BFC, Geurts HM. Quality of life in autism across the lifespan: A meta-analysis. Autism. 2015. 8. Vranceanu AM, Merker VL, Park ER, Plotkin SR. Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature. Journal of Neuro-Oncology. 2015. 9. de Vries PJ, Franz DN, Curatolo P, Nabbout R, Neary M, Herbst F, et al. Measuring health-related quality of life in Tuberous sclerosis complex - psychometric evaluation of three instruments in individuals with refractory epilepsy. Front Pharmacol. 2018. 10. Both P, ten Holt L, Mous S, Patist J, Rietman A, Dieleman G, et al. Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood. Epilepsy Behav. 2018. 11. De Vries PJ, Belousova E, Benedik MP, Carter T, Cottin V, Curatolo P, et al. Natural clusters of tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders (TAND): New findings from the TOSCA TAND research project. J Neurodev Disord. 2020;12(1). 12. Rietman AB, van Helden H, Both PH, Taal W, Legerstee JS, van Staa AL, et al. Worries and needs of adults and parents of adults with neurofibromatosis type 1. Am J Med Genet Part A. 2018. 13. Ju YJ, Kim TH, Han KT, Lee HJ, Kim W, Lee SA, et al. Association between unmet healthcare needs and health-related quality of life: A longitudinal study. Eur J Public Health. 2017. 14. van Walsem MR, Howe EI, Ruud GA, Frich JC, Andelic N. Health-related quality of life and unmet healthcare needs in Huntington’s disease. Health Qual Life Outcomes. 2017. 15. Capal JK, Bernardino-Cuesta B, Horn PS, Murray D, Byars AW, Bing NM, et al. Influence of seizures on early development in tuberous sclerosis complex. Epilepsy Behav. 2017;70. 16. Boylan LS, Flint LA, Labovitz DL, Jackson SC, Starner K, Devinsky O. Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy. Neurology. 2004;62(2). 17. Krueger DA, Wilfong AA, Mays M, Talley CM, Agricola K, Tudor C, et al. Long-term treatment of epilepsy with everolimus in tuberous sclerosis. Neurology. 2016;87(23). 18. Frew JW, Davidson M, Murrell DF. Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: A systematic review and critical evaluation. Orphanet Journal of Rare Diseases. 2017. 19. Valderas JM, Kotzeva A, Espallargues M, Guyatt G, Ferrans CE, Halyard MY, et al. The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research. 2008. Annelieke Muller sHL.indd 162 14-11-2023 09:07