Registry Rare Tumours (STEP 2.0)

Author:  Dr. med. Ines Becht, Julia Dobke, Last modification: 2024/10/29 https://kinderkrebsinfo.de/doi/e84863

Disease

Rare tumours that are not part of other prospective GPOH therapy trials or registries, such as skin tumours (including malignant melanomas), ENT tumours, gatrointestinal tumours (colon carcinoma, pancreatic tumours), rare gonadal tumours

Type

Registry for the optimisation of the epidemiological and clinical registration of children and adolescents with very rare tumours

Rationale / Objectives
  1. Comprehensive prospective clinical data acquisition of particularly rare tumours in childhood and adolescence for more precise definition, characterisation and classification of rare tumour entities including long-term follow-up
  2. Provision of clinical data for retrospective subgroup analyses in the context of research projects in order to contribute to improving the quality of diagnostics and treatment of children and adolescents with particularly rare tumour diseases
  3. Support for translational research projects
  4. Further development of the network for interdisciplinary cooperation in the field of rare tumours
  5. Expansion of international collaboration
  6. Cooperation with other GPOH registries, including the MET Registry, the Cancer Predisposition Registry and the INFORM Registry
Inclusion Criteria
  • Diagnosis of a rare solid tumour (see list below, in German)
  • The histological entity is not included as an inclusion criterion in a therapy optimisation study or GPOH registry for study or observational patients.
  • Age at diagnosis: from the newborn period to 18 years of age (for young adults up to the age of 30, registration in the database can be made on request and after obtaining informed consent)
  • Written informed consent of the patient and/or the parent(s)
Exclusion Criteria
  • Registration into any other prospective therapy trial or registry of the GPOH
  • Lack of information, medical consultation and/or the patients' and/or legal guardians' written consent
Status Start: 01/11/2012, until further notice
Principal Investigator D.T. Schneider, I. Brecht
E-Mail step@klinikum-dortmund.de
URL https://www.raretumors-children.eu
Contact

Principal Investigator

Prof. Dr. med. Dominik T. Schneider Klinikum Dortmund gGmbH Klinik für Kinder- und Jugendmedizin Beurhausstraße 40 44137 Dortmund Telefon +49 (231) 953 21670 Fax +49 (231) 953 21047 dominik.schneider@klinikumdo.de

PD Dr. med. Ines Brecht Universitätsklinik für Kinder- und Jugendmedizin Tübingen Registerleitung STEP / Pädiatrische Onkologie und Hämatologie Hoppe-Seyler-Str. 1 72076 Tübingen Telefon +49 (7071) 29-83781 Fax +49 (7071) 29-5481 ines.brecht@med.uni-tuebingen.de

Registry Coordinator

Dr. med. Michael Abele Universitätsklinik für Kinder- und Jugendmedizin Tübingen Hoppe-Seyler-Str. 1 72076 Tübingen Telefon +49 7071 29 83781 (Pforte Kinderklinik)

Documentation (STEP entities excluding rare gonadal tumors)

Christine Mast Universitätsklinik für Kinder- und Jugendmedizin Tübingen STEP-Register, Abteilung I, Pädiatrische Onkologie u. Hämatologie Hoppe-Seyler-Str. 1 72076 Tübingen Telefon +49 (7071) 29-81380 Fax +49 (7071) 29-5481 Christine.Mast@med.uni-tuebingen.de

Documentation (rare gonadal tumors)

Susann Drerup Klinikum Dortmund gGmbH Klinik für Kinder- und Jugendmedizin Beurhausstraße 40 44137 Dortmund Telefon +49 (231) 953 19923 Fax +49 (231) 953 21909 susann.drerup@klinikumdo.de

Reference Pathology

Prof. Dr. med. Christian Vokuhl Institut für Pathologie der Universität Bonn Sektion Kinderpathologie Venusberg-Campus 1 53127 Bonn Telefon +49 228 287 13588 Fax +49 228 287 10451 Christian.Vokuhl(at)ukbonn.de

Documents
Link(s) Publications
Sponsoring German Childhood Cancer Foundation (Deutsche Kinderkrebsstiftung), Kinderkrebsfürsorge Wickede e.V., Verein zur Förderung des Tumorzentrums der Universität Erlangen-Nürnberg e.V.