Kraniopharyngeom Registry 2019

Author:  Svenja Boeckhoff/Julia Dobke, Last modification: 2024/05/08 https://kinderkrebsinfo.de/doi/e253174

Kraniopharyngeom Registry 2019

Multicenter registry for patients with childhood-onset craniopharyngioma, xanthogranuloma, cysts of Rathke’s pouch, meningioma, pituitary adenoma, arachnoid cysts

Disease

Childhood-onset craniopharyngioma, xanthogranuloma, cysts of Rathke’s pouch, meningioma, pituitary adenoma, arachnoid cysts

Type

Registry

Rationale / 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 QoL
  • 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 molecular risk factors and to identify new targets for therapy
Therapy / Study arms

The registry collects data and gives medical advice. Treatment should be Standard of care.

Inclusion Criteria
  • Confirmed histological diagnosis of craniopharyngioma, xanthogranuloma cysts of Rathke’s pouch, meningioma, pituitary adenoma or arachnoid cysts in patients ≤18 yrs by reference pathology
  • Informed consent by legal guardians and/or patient to contribute data to the registry
Exclusion Criteria
  • Absence of informed consent by legal guardians and/or patient to contribute data to the registry
Recruitment unlimited
Status Start: 01.10.2019 Ende: unlimited
Principal Investigator PD Dr. md. Carsten Friedrich
E-Mail kikra.doku@klinikum-oldenburg.de
Contact

Principal Investigator

PD Dr. med. Carsten Friedrich Klinikum Oldenburg AöR, Universitätskinderklinik für Kinder- und Jugendmedizin Abteilung für Allgemeine Pädiatrie, Pädiatrische Hämatologie / Onkologie Rahel-Straus-Str. 10 26133 Oldenburg Telefon +49 (441) 403 70708 Fax +49 (441) 403 12623 friedrich.carsten@klinikum-oldenburg.de

Scientific trial assistence

Julia Beckhaus Klinikum Oldenburg AöR, Universitätsklinikum für Kinder- und Jugendmedizin Studienzentrale Kraniopharyngeom Rahel-Straus-Str. 10 26133 Oldenburg Telefon +49 441 403 77219 Fax +49 441 403 2789 beckhaus.julia@klinikum-oldenburg.de

Documentation

Eliane Biermann-Brauer Klinikum Oldenburg AöR Universitätsklinikum für Kinder- und Jugendmedizin Studienzentrale Kraniopharyngeom Rahel-Straus-Str. 10 26133 Oldenburg Telefon 0049 (441) 403 70693 Fax +49 441 403 2789 Biermann-brauer.eliane@klinikum-oldenburg.de

Documents
Sponsoring Deutsche Kinderkrebsstiftung, Bonn