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TITLE: TuberOus SClerosis registry to increAse disease awareness (TOSCA) Post-Authorisation Safety Study of Everolimus in Patients With Tuberous Sclerosis Complex  Full Text
AUTHORS: Kingswood, JC; Belousova, E; Benedik, MP; Budde, K; Carter, T; Cottin, V; Curatolo, P; Dahlin, M; D'Amato, L; d'Augeres, GB; de Vries, PJ; Ferreira, JC; Feucht, M; Fladrowski, C; Hertzberg, C; Jozwiak, S; Lawson, JA; Macaya, A; Marques, R; Nabbout, R; O'Callaghan, F; Qin, J; Sander, V; Sauter, M; Shah, SM; Takahashi, Y; Touraine, R; Youroukos, S; Zonnenberg, B; Jansen, AC; ...More
PUBLISHED: 2021, SOURCE: FRONTIERS IN NEUROLOGY, VOLUME: 12
INDEXED IN: Scopus WOS
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TITLE: Historical Patterns of Diagnosis, Treatments, and Outcome of Epilepsy Associated With Tuberous Sclerosis Complex: Results From TOSCA Registry  Full Text
AUTHORS: Nabbout, R; Belousova, E; Benedik, MP; Carter, T; Cottin, V; Curatolo, P; Dahlin, M; D'Amato, L; d'Augeres, GB; de Vries, PJ; Ferreira, JC; Feucht, M; Fladrowski, C; Hertzberg, C; Jozwiak, S; Lawson, JA; Macaya, A; Marques, R; O'Callaghan, F; Qin, J; Sauter, M; Shah, S; Takahashi, Y; Touraine, R; Youroukos, S; Zonnenberg, B; Jansen, AC; Kingswood, JC; ...More
PUBLISHED: 2021, SOURCE: FRONTIERS IN NEUROLOGY, VOLUME: 12
INDEXED IN: Scopus WOS
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TITLE: Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND): New Findings on Age, Sex, and Genotype in Relation to Intellectual Phenotype  Full Text
AUTHORS: Petrus J de Vries; Elena Belousova; Mirjana P Benedik; Tom Carter; Vincent Cottin; Paolo Curatolo; Maria Dahlin; Lisa D'Amato; Guillaume Beaure d'Augeres; Jose C Ferreira; Martha Feucht; Carla Fladrowski; Christoph Hertzberg; Sergiusz Jozwiak; John A Lawson; Alfons Macaya; Ruben Marques; Rima Nabbout; Finbar O'Callaghan; Jiong Qin; Valentin Sander; Matthias Sauter; Seema Shah; Yukitoshi Takahashi; Renaud Touraine; Sotiris Youroukos; Bernard Zonnenberg; John C Kingswood; Anna C Jansen; ...More
PUBLISHED: 2020, SOURCE: FRONTIERS IN NEUROLOGY, VOLUME: 11
INDEXED IN: Scopus WOS
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TITLE: Renal angiomyolipoma in patients with tuberous sclerosis complex: findings from the TuberOus SClerosis registry to increase disease Awareness
AUTHORS: Chris C Kingswood; Elena Belousova; Mirjana P Benedik; Tom Carter; Vincent Cottin; Paolo Curatolo; Maria Dahlin; Lisa D' Amato; Guillaume Beaure d'Augeres; Petrus J de Vries; Jose C Ferreira; Martha Feucht; Carla Fladrowski; Christoph Hertzberg; Sergiusz Jozwiak; John A Lawson; Alfons Macaya; Ruben Marques; Rima Nabbout; Finbar O'Callaghan; Jiong Qin; Valentin Sander; Matthias Sauter; Seema Shah; Yukitoshi Takahashi; Renaud Touraine; Sotiris Youroukos; Bernard Zonnenberg; Anna C Jansen; ...More
PUBLISHED: 2019, SOURCE: NEPHROLOGY DIALYSIS TRANSPLANTATION, VOLUME: 34, ISSUE: 3
INDEXED IN: WOS
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TITLE: TSC-associated neuropsychiatric disorders (TAND): findings from the TOSCA natural history study  Full Text
AUTHORS: Petrus J de Vries; Elena Belousova; Mirjana P Benedik; Tom Carter; Vincent Cottin; Paolo Curatolo; Maria Dahlin; Lisa D'Amato; Guillaume B d'Augeres; Jose C Ferreira; Martha Feucht; Carla Fladrowski; Christoph Hertzberg; Sergiusz Jozwiak; Chris C Kingswood; John A Lawson; Alfons Macaya; Ruben Marques; Rima Nabbout; Finbar O'Callaghan; Jiong Qin; Valentin Sander; Matthias Sauter; Seema Shah; Yukitoshi Takahashi; Renaud Touraine; Sotiris Youroukos; Bernard Zonnenberg; Anna C Jansen; ...More
PUBLISHED: 2018, SOURCE: ORPHANET JOURNAL OF RARE DISEASES, VOLUME: 13
INDEXED IN: WOS
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TITLE: TuberOus SClerosis registry to increase disease Awareness (TOSCA) - baseline data on 2093 patients  Full Text
AUTHORS: John C Kingswood; Guillaume B d'Augeres; Elena Belousova; Jose C Ferreira; Tom Carter; Ramon Castellana; Vincent Cottin; Paolo Curatolo; Maria Dahlin; Petrus J de Vries; Martha Feucht; Carla Fladrowski; Gabriella Gislimberti; Christoph Hertzberg; Sergiusz Jozwiak; John A Lawson; Alfons Macaya; Rima Nabbout; Finbar O'Callaghan; Mirjana P Benedik; Jiong Qin; Ruben Marques; Valentin Sander; Matthias Sauter; Yukitoshi Takahashi; Renaud Touraine; Sotiris Youroukos; Bernard Zonnenberg; Anna C Jansen; ...More
PUBLISHED: 2017, SOURCE: ORPHANET JOURNAL OF RARE DISEASES, VOLUME: 12
INDEXED IN: WOS
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TITLE: TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND): BASELINE DATA FROM THE TOSCA INTERNATIONAL DISEASE REGISTRY  Full Text
AUTHORS: de Vries, PJ; D'Augeres, GB; Belousova, E; Carter, T; Castellana, R; Cottin, V; Crippa, S; Curatolo, P; Ferreira, JC; Fladrowski, C; Feucht, M; Gislimberti, G; Hertzberg, C; Qin, J; Jozwiak, S; Kingswood, JC; Lawson, J; Macaya, A; Nabbout, R; O'Callaghan, F; Benedik, MP; Sander, V; Sauter, M; Takahashi, Y; Touraine, R; Youroukos, S; Ulker, B; Zonnenberg, B; Jansen, A; ...More
PUBLISHED: 2015, SOURCE: JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, VOLUME: 59, ISSUE: 9
INDEXED IN: WOS
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TITLE: TOSCA - first international registry to address knowledge gaps in the natural history and management of tuberous sclerosis complex  Full Text
AUTHORS: John C Kingswood; Paolo Bruzzi; Paolo Curatolo; Petrus J de Vries; Carla Fladrowski; Christoph Hertzberg; Anna C Jansen; Sergiusz Jozwiak; Rima Nabbout; Matthias Sauter; Renaud Touraine; Finbar O'Callaghan; Bernard Zonnenberg; Stefania Crippa; Silvia Comis; Guillaume Beaure d'Augeres; Elena Belousova; Tom Carter; Vincent Cottin; Maria Dahlin; Jose Carlos Ferreira; Alfons Macaya; Mirjana Perkovic Benedik; Valentin Sander; Sotirios Youroukos; Ramon Castellana; Bulent Ulker; Martha Feucht; ...More
PUBLISHED: 2014, SOURCE: ORPHANET JOURNAL OF RARE DISEASES, VOLUME: 9, ISSUE: 1
INDEXED IN: WOS CrossRef