iHIT-HGG Registry

Author:  J. Dobke, Last modification: 2024/07/30 https://kinderkrebsinfo.de/doi/e274713

iHIT-HGG Registry International Registry of the HIT-HGG Study Group for Paediatric Patients and Young Adults with High Grade Gliomas
Disease Diffuse high-grade gliomas WHO grade IV / CNS WHO grade 4; Diffuse high-grade gliomas WHO grade III / CNS WHO grade 3; Diffuse high-grade / malignant gliomas of indeterminate grade; Circumscribed (non-diffuse) gliomas with anaplasia and/or ≥ WHO grade III / CNS WHO grade 3; Gliomatosis cerebri as a neuroradiological diagnosis; Diffuse intrinsic pons gliomas as a neuroradiological diagnosis
Type European registry – temporarily stopped
Rationale / Objectives

The iHIT-HGG registry collects epidemiological, diagnostic and clinical data from paediatric patients and young adults who are or have been treated at a paediatric oncology centre of the GPOH in Germany, Austria or Switzerland. Our aim is to gain new insights into these very rare tumour diseases through continuous international cooperation.
Oncological centres beyond the GPOH are welcome to participate.
Inclusion Criteria
  • All new or recently diagnosed high-grade gliomas in neonates, infants, children, adolescents and young adults (patients aged up to 24 years undergoing treatment at a paediatric oncology centre) are eligible for inclusion.
  • Current, past or future participation in a clinical trial is desired and does not constitute an exclusion criterion.
  • Written informed consent of the patient and/or the parents or legal guardians must be available.
  • If it is not possible to obtain written consent, e.g. because the patient is already deceased, there are no plans to routinely record the data in the registry. However, if the patient's data is made available in anonymized form as part of a scientific cooperation project, it may be transferred to the data collection.
  • A valid vote by a national and/or local ethics committee (IRB) in the participating country must be available.
Recruitment Ca. 50 patients per year in Germany
Status Start: 01/01/2023, temporary recruitment stopp since 22/05/2023
Principal Investigator Prof. Dr. med. C. Kramm
E-Mail hit-hgg-studie@med.uni-goettingen.de
Contact

E-Mailkontakt über hit-hgg-studie@med.uni-goettingen.de

Principal investigator

Prof. Dr. med. Christof Kramm Klinik- für Kinder- und Jugendmedizin Leiter Abteilung Pädiatrische Hämatologie/Onkologie Robert-Koch-Str. 40 37075 Göttingen Telefon +49 551/39 63081 Fax +49 551/39 63083

Coordination

Marion Hoffmann, PhD Universitätsmedizin Göttingen Klinik für Kinder und Jugendmedizin, Pädiatrische Onkologie und Hämatologie Robert-Koch-Str. 40 37075 Göttingen Telefon +49 (551) 39 63085 Fax +49 (551) 39 63083

Data manager

Silke Kullmann Georg-August-Universität Universitäts-Kinderklinik, Pädiatrie I Robert-Koch-Str. 40 37075 Göttingen Telefon +49 (551) 39 63086 Fax +49 (551) 39 63087

Participants Germany, Switzerland, Austria
Sponsoring Deutsche Kinderkrebsstiftung, Bonn, Germany