Registry Rare Tumours (STEP 2.0)

Author:  Dr. med. Ines Becht, Julia Dobke, Last modification: 2024/05/30 https://kinderkrebsinfo.de/doi/e84863

Disease

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

Registry for the optimization of the epidemiological and clinical registration of children and adolescents with very rare tumors
Problem / Objectives
  1. Improved epidemiological and clinical registration of children and adolescents with very rare tumors
  2. Scientific evaluation of the collected data
  3. Development of strategies/recommendations for diagnostics and therapy
  4. Recommendation for the inclusion of patients in adequate therapy optimizing trials or phase I/II trials
  5. Creation of a visible platform for the consultation of patients and hospitals
  6. Availability of competence centres (i.e. tumor registry in Kiel for diagnostical questions) and better inclusion of rare tumor patients within paediatric oncology health care in Germany
Inclusion Criteria
  • Diagnosis of a rare solid tumor (see list below, in German)
  • Age at diagnosis 0-18 years
  • 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

Documentation (STEP entities excluding 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 Deutsche Kinderkrebsstiftung, Kinderkrebsfürsorge Wickede e.V., Verein zur Förderung des Tumorzentrums der Universität Erlangen-Nürnberg e.V.