Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study

A systematic review on the burden of illness in individuals with tuberous sclerosis complex (TSC)

(2020) Johann Philipp Zöllner et al.   Orphanet Journal of Rare Diseases

Health utilities and quality of life in individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: A web-based survey

(2019) Theo Tritton et al.   EPILEPSY & BEHAVIOR

A step-wise approach for establishing a multidisciplinary team for the management of tuberous sclerosis complex: a Delphi consensus report

(2019) Stéphane Auvin et al.   Orphanet Journal of Rare Diseases

Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex

(2019) Claire Bar et al.   EPILEPSY & BEHAVIOR

Quality of life in patients with Tuberous Sclerosis Complex (TSC)

(2019) Sam Amin et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood

(2018) Pauline Both et al.   EPILEPSY & BEHAVIOR

Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

(2018) Anne M. Skalicky et al.   JOURNAL OF MEDICAL ECONOMICS

Central nervous system manifestations of tuberous sclerosis complex

(2018) Derek S. Lu et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART C-SEMINARS IN MEDICAL GENETICS

The development of an ICF-based questionnaire for patients with chronic conditions in primary care

(2018) S.A.E. Postma et al.   JOURNAL OF CLINICAL EPIDEMIOLOGY

Measuring Health-Related Quality of Life in Tuberous Sclerosis Complex – Psychometric Evaluation of Three Instruments in Individuals With Refractory Epilepsy

(2018) Petrus J. de Vries et al.   Frontiers in Pharmacology

The natural history and burden of illness of epilepsy in tuberous sclerosis complex (TSC): A systematic literature review

(2017) A. Patel et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

TuberOus SClerosis registry to increase disease Awareness (TOSCA) – baseline data on 2093 patients

(2017) John C. Kingswood et al.   Orphanet Journal of Rare Diseases

Factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program

(2017) Maxime Morsa et al.   PATIENT EDUCATION AND COUNSELING

Understanding the health economic burden of patients with tuberous sclerosis complex (TSC) with epilepsy: a retrospective cohort study in the UK Clinical Practice Research Datalink (CPRD)

(2017) Charles Shepherd et al.   BMJ Open

The clinical profile of tuberous sclerosis complex (TSC) in the United Kingdom: A retrospective cohort study in the Clinical Practice Research Datalink (CPRD)

(2016) Christopher Kingswood et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

Effect of Angiofibromas on Quality of Life and Access to Care in Tuberous Sclerosis Patients and Their Caregivers

(2016) Cary Crall et al.   PEDIATRIC DERMATOLOGY

Caring for Children With Tuberous Sclerosis Complex

(2015) Anne M. Rentz et al.   JOURNAL OF CHILD NEUROLOGY

Neurological and neuropsychiatric aspects of tuberous sclerosis complex

(2015) Paolo Curatolo et al.   LANCET NEUROLOGY

Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist

(2015) Loren Leclezio et al.   PEDIATRIC NEUROLOGY

Tuberous Sclerosis Complex: A Survey of Health Care Resource Use and Health Burden

(2015) Anne M. Rentz et al.   PEDIATRIC NEUROLOGY

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

(2015) Petrus J. de Vries et al.   PEDIATRIC NEUROLOGY

The Burden of Subependymal Giant Cell Astrocytomas Associated With Tuberous Sclerosis Complex

(2014) Anne M. Skalicky et al.   JOURNAL OF CHILD NEUROLOGY

TOSCA – first international registry to address knowledge gaps in the natural history and management of tuberous sclerosis complex

(2014) John C Kingswood et al.   Orphanet Journal of Rare Diseases

Chronic Illness in the Workplace: Stigma, Identity Threat and Strain

(2013) Alyssa K. McGonagle et al.   STRESS AND HEALTH

Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents’ experience and caring needs

(2013) Guendalina Graffigna et al.   BMJ Open

A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions

(2011) L. A. Schwartz et al.   CHILD CARE HEALTH AND DEVELOPMENT

Burden of disease and unmet needs in tuberous sclerosis complex with neurological manifestations: systematic review

(2011) Lindsay Hallett et al.   CURRENT MEDICAL RESEARCH AND OPINION

Quality of life following epilepsy surgery for children with tuberous sclerosis complex

(2011) Jonathan Roth et al.   EPILEPSY & BEHAVIOR

Participation as an outcome measure in psychosocial oncology: content of cancer-specific health-related quality of life instruments

(2011) Sijrike F. van der Mei et al.   QUALITY OF LIFE RESEARCH

Systematic literature review on ICF from 2001 to 2009: its use, implementation and operationalisation

(2010) Milda Cerniauskaite et al.   DISABILITY AND REHABILITATION

Tuberous Sclerosis Complex: Diagnostic Challenges, Presenting Symptoms, and Commonly Missed Signs

(2010) B. A. Staley et al.   PEDIATRICS

Assessment of quality of life and participation within an outpatient rehabilitation setting

(2009) Suzanne J. Ackerley et al.   DISABILITY AND REHABILITATION

Behavior problems in children with tuberous sclerosis complex and parental stress

(2008) Claudine M.C. Kopp et al.   EPILEPSY & BEHAVIOR

Tuberous sclerosis

(2008) Paolo Curatolo et al.   LANCET