NPC-registry 2016

Author: Julia Dobke, erstellt am: 2017/12/08, Last modification: 2019/09/17

NPC-registry 2016 NPC-2016 - A multicenter registry for nasopharyngeal cancer in children, adolescents and young adults
Disease nasopharyngeal cancer
Type Registry
Problem / Objectives
  • Collect epidemiological information
  • Collect information on treatment and outcome to determine whether a relationship exists between outcomes and specific interventions
  • Collect information on late effects and quality of life
  • Assess the quality of treatment by the means of data collection, data check and an advisory service provided by the registry and the reference centers
  • Establishment of a tumor bank as a base for further biological studies to define new risk factors and to identify new targets for therapy
Therapy / Study arms

Based on the study results of the trial NPC-2003 the PI offers therapy recommendations for the treatment of the EBV-associated nasopharyngeal Carcinoma. The recommendations correspond to the standard of care for Nasopharyngeal Carcinomas.

Inclusion Criteria
  • Confirmed diagnosis of nasopharyngeal carcinoma in patients ≤ 18 years
  • Informed consent by legal guardians and/or patient to contribute data to the registry

In case of EBV-positive NPC WHO Typ IIb or III, patients older than 18 years of age can be included as well.

Exclusion Criteria
  • Absence of informed consent by legal guardians and/or patient to contribute data to the registry.
Status Start: 24/08/2017; end: open
Principal Investigator Prof. Dr. med Udo Kontny
E-Mail npc@ukaachen.de
URL www.npc.ukaachen.de
Contact

Principal investigator

Prof. Dr. Udo Kontny Klinik für Kinder- und Jugendmedizin Universitätsklinikum Aachen Sektion Pädiatrische Onkologie und Stammzelltransplantation Pauwelsstraße 30 52074 Aachen Telefon +49 (241) 80 88892/89902 Fax +49 (241) 80 82481 ukontny@ukaachen.de

Coordination

Dr. med. Sabrina Franzen Universitätsklinik der RWTH Aachen Klinik für Kinder- und Jugendmedizin Pauwelsstr. 30 52074 Aachen Telefon +49 (0241) 80 89 222 Fax +49 (0241) 80 82 423 sfranzen@ukaachen.de

Documentation

Ute Rohrberg Universitätsklinikum Aachen, Sektion Hämatologie, Onkologie und Stammzelltransplantation Pauwelsstr. 30 52074 Aachen Telefon +49 (0)241 80 89926 Fax +49 (0)241 80 82481 urohrberg@ukaachen.de

Reference pathology

Dr. med. Christian Vokuhl Institut für Pathologie der Universität Kiel Sektion Kinderpathologie, Haus 14 Arnold-Heller-Str. 3 24105 Kiel Telefon +49 (431) 500 15603 Fax +49 (431) 500 15604 cvokuhl@path.uni-kiel.de

EBV-Diaggnostic

Dr. rer. nat. Wolfram Puppe Prof. Dr. med. Thomas Schulz Medizinische Hochschule Hannover Institut für Virologie Carl-Neuberg-Str. 1 30625 Hannover Telefon +49 (0)511 532-4281 Fax +49 (0)511 532-8736 Puppe.Wolfram@mh-hannover.de

Sponsoring Förderkreis "Hilfe für krebskranke Kinder Aachen"