Treatment Patterns and Use of Resources in Patients With Tuberous Sclerosis Complex: Insights From the TOSCA Registry.

TOSCA TSC management rare diseases registry resource use

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: 21 08 2019
accepted: 14 10 2019
entrez: 12 11 2019
pubmed: 12 11 2019
medline: 12 11 2019
Statut: epublish

Résumé

Tuberous Sclerosis Complex (TSC) is a rare autosomal-dominant disorder caused by mutations in the

Identifiants

pubmed: 31708865
doi: 10.3389/fneur.2019.01144
pmc: PMC6823684
doi:

Types de publication

Journal Article

Langues

eng

Pagination

1144

Informations de copyright

Copyright © 2019 Marques, Belousova, Benedik, Carter, Cottin, Curatolo, Dahlin, D'Amato, Beaure d'Augères, de Vries, Ferreira, Feucht, Fladrowski, Hertzberg, Jozwiak, Lawson, Macaya, Nabbout, O'Callaghan, Qin, Sander, Sauter, Shah, Takahashi, Touraine, Youroukos, Zonnenberg, Kingswood and Jansen.

Références

BMJ Open. 2017 Oct 5;7(10):e015236
pubmed: 28982809
Pediatr Neurol. 2013 Dec;49(6):439-44
pubmed: 24138953
Lancet. 2008 Aug 23;372(9639):657-68
pubmed: 18722871
Seizure. 2017 Dec;53:4-9
pubmed: 29078087
J Child Neurol. 2015 Apr;30(5):563-9
pubmed: 24667738
Pediatr Radiol. 2008 Sep;38(9):936-52
pubmed: 18414839
J Eur Acad Dermatol Venereol. 2016 Apr;30(4):586-94
pubmed: 26403211
N Engl J Med. 2011 Apr 28;364(17):1595-606
pubmed: 21410393
J Med Econ. 2015;18(12):1060-70
pubmed: 26201433
Orphanet J Rare Dis. 2018 Sep 10;13(1):157
pubmed: 30201051
Lancet Neurol. 2015 Jul;14(7):733-45
pubmed: 26067126
Epilepsy Behav. 2019 Jul;96:23-27
pubmed: 31077938
J Med Econ. 2015 May;18(5):349-56
pubmed: 25525770
JAMA. 2013 Nov 27;310(20):2191-4
pubmed: 24141714
J Child Neurol. 2013 Apr;28(4):461-9
pubmed: 22772159
Pediatr Neurol. 2015 Apr;52(4):435-41
pubmed: 25771998
World Neurosurg. 2016 Jul;91:97-105
pubmed: 27025453
Epilepsia. 2004;45 Suppl 4:41-2
pubmed: 15281957
Chest. 2015 Aug;148(2):444-449
pubmed: 25789699
Handb Clin Neurol. 2013;111:323-31
pubmed: 23622183
Eur Child Adolesc Psychiatry. 2005 Jul;14(4):183-90
pubmed: 15981129
Int Dig Health Legis. 1997;48(2):231-4
pubmed: 11656783
Eur J Paediatr Neurol. 2018 Sep;22(5):738-748
pubmed: 29880258
Eur Respir J. 2010 Jan;35(1):14-26
pubmed: 20044458
Orphanet J Rare Dis. 2014 Nov 26;9:182
pubmed: 25424195
Pediatr Neurol. 2013 Oct;49(4):255-65
pubmed: 24053983
J Child Neurol. 2004 Sep;19(9):643-9
pubmed: 15563009
Am J Respir Crit Care Med. 2016 Sep 15;194(6):748-61
pubmed: 27628078
J Med Econ. 2016 Nov;19(11):1087-1098
pubmed: 27267148

Auteurs

Ruben Marques (R)

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

Elena Belousova (E)

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

Mirjana P Benedik (MP)

SPS Pediatrična Klinika, Ljubljana, Slovenia.

Tom Carter (T)

TSA Tuberous Sclerosis Association, Nottingham, United Kingdom.

Vincent Cottin (V)

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

Paolo Curatolo (P)

Tor Vergata University Hospital, Rome, Italy.

Maria Dahlin (M)

Karolinska University Hospital, Stockholm, Sweden.

Lisa D'Amato (L)

Novartis Farma SpA, 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)

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, In den Birken, Dattein, Germany.

Christoph Hertzberg (C)

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)

Hospital Universitari Vall d'Hebron, Barcelona, Spain.

Rima Nabbout (R)

Department of Pediatric Neurology, Necker Enfants Malades Hospital, Imagine institute Inserm 1163, Paris Descartes University, Paris, France.

Finbar O'Callaghan (F)

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

Jiong Qin (J)

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

Valentin Sander (V)

Tallinn Children Hospital, Tallinn, Estonia.

Matthias Sauter (M)

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, Shizuoka, Japan.

Renaud Touraine (R)

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

Sotiris Youroukos (S)

St. Sophia Children's Hospital, Athens, Greece.

Bernard Zonnenberg (B)

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.

Anna C Jansen (AC)

Pediatric Neurology Unit, Department of Pediatrics, Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel, Brussels, Belgium.

Classifications MeSH