Newly Diagnosed and Growing Subependymal Giant Cell Astrocytoma in Adults With Tuberous Sclerosis Complex: Results From the International TOSCA Study.

SEGA TOSCA mTOR registry tuberous sclerosis complex

Journal

Frontiers in neurology
ISSN: 1664-2295
Titre abrégé: Front Neurol
Pays: Switzerland
ID NLM: 101546899

Informations de publication

Date de publication:
2019
Historique:
received: 06 04 2019
accepted: 16 07 2019
entrez: 21 8 2019
pubmed: 21 8 2019
medline: 21 8 2019
Statut: epublish

Résumé

The onset and growth of subependymal giant cell astrocytoma (SEGA) in tuberous sclerosis complex (TSC) typically occurs in childhood. There is minimal information on SEGA evolution in adults with TSC. Of 2,211 patients enrolled in TOSCA, 220 of the 803 adults (27.4%) ever had a SEGA. Of 186 patients with SEGA still ongoing in adulthood, 153 (82.3%) remained asymptomatic, and 33 (17.7%) were reported to ever have developed symptoms related to SEGA growth. SEGA growth since the previous scan was reported in 39 of the 186 adults (21%) with ongoing SEGA. All but one patient with growing SEGA had mutations in

Identifiants

pubmed: 31428037
doi: 10.3389/fneur.2019.00821
pmc: PMC6688052
doi:

Types de publication

Journal Article

Langues

eng

Pagination

821

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Auteurs

Anna C Jansen (AC)

Pediatric Neurology Unit, Department of Pediatrics, UZ Brussel VUB, Brussels, Belgium.

Elena Belousova (E)

Research and Clinical Institute of Pediatrics, Pirogov Russian National Research Medical University, Moscow, Russia.

Mirjana P Benedik (MP)

Child Neurology Department, SPS Pediatrična Klinika, Ljubljana, Slovenia.

Tom Carter (T)

Tuberous Sclerosis Association (TSA), Nottingham, United Kingdom.

Vincent Cottin (V)

Hôpital Louis Pradel, Claude Bernard University Lyon 1, Lyon, France.

Paolo Curatolo (P)

Child Neurology and Psychiatry Unit, Systems Medicine Department, Tor Vergata University Hospital, Rome, Italy.

Lisa D'Amato (L)

Novartis Farma S.p.A., Origgio, Italy.

Guillaume Beaure d'Augères (G)

Association Sclérose Tubéreuse de Bourneville, Gradignan, France.

Petrus J de Vries (PJ)

Division of Child and Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa.

José C Ferreira (JC)

Neurology Department, Centro Hospitalar Lisboa Ocidental, Lisbon, Portugal.

Martha Feucht (M)

Medical University of Vienna, Universitätsklinik für Kinder-und Jugendheilkunde, Vienna, Austria.

Carla Fladrowski (C)

Associazione Sclerosi Tuberosa ONLUS, Milan, Italy.
European Tuberous Sclerosis Complex Association, Dattein, Germany.

Christoph Hertzberg (C)

Zentrum für Neuropädiatrie und Sozialpädiatrie, Vivantes-Klinikum Neukölln, Berlin, Germany.

Sergiusz Jozwiak (S)

Department of Child Neurology, Warsaw Medical University, Warsaw, Poland.
Department of Neurology and Epileptology, The Children's Memorial Health Institute, Warsaw, Poland.

John A Lawson (JA)

The Tuberous Sclerosis Multidisciplinary Management Clinic, Sydney Children's Hospital, Randwick, NSW, Australia.

Alfons Macaya (A)

Pediatric Neurology Section, Hospital Universitari Vall d'Hebron, Barcelona, Spain.

Ruben Marques (R)

Novartis Farma S.p.A., Origgio, Italy.
Institute of Biomedicine (IBIOMED), University of Leon, León, Spain.

Rima Nabbout (R)

Department of Pediatric Neurology, Necker Enfants Malades Hospital, Paris Descartes University, Paris, France.

Finbar O'Callaghan (F)

Paediatric Neuroscience, Institute of Child Health, University College London, London, United Kingdom.

Jiong Qin (J)

Department of Pediatrics, Peking University People's Hospital, Beijing, China.

Valentin Sander (V)

Neurology and Rehabilitation, Tallinn Children Hospital, Tallinn, Estonia.

Matthias Sauter (M)

Klinikum Kempten, Klinikverbund Kempten-Oberallgäu gGmbH, Kempten, Germany.

Seema Shah (S)

Novartis Healthcare Pvt Ltd., Hyderabad, India.

Yukitoshi Takahashi (Y)

National Epilepsy Center, Shizuoka Institute of Epilepsy and Neurological Disorders, NHO, Aoi-ku, Japan.

Renaud Touraine (R)

Department of Genetics, CHU-Hôpital Nord, Saint Etienne, France.

Sotiris Youroukos (S)

First Department of Paediatrics, Athens University, St. Sophia Children's Hospital, Athens, Greece.

Bernard Zonnenberg (B)

Department of Internal Medicine, University Medical Center, Utrecht, Netherlands.

John C Kingswood (JC)

Cardiology Clinical Academic Group, Molecular and Clinical Sciences Research Centre, St. Georges University of London, London, United Kingdom.

Classifications MeSH