International HIT-MED Registry (I-HIT-MED)

Childhood Brain Tumor Clinical Trial

Official title: International HIT-MED Registry (I-HIT-MED) for Children, Adolescents, and Adults With Medulloblastoma, Ependymoma, Pineoblastoma, CNS-primitive Neuroectodermal Tumours

Status Suspended

Clinical Trial Summary

The I-HIT-MED registry registers clinical of children and adults with medulloblastoma, ependymoma, pineoblastoma, or CNS-primitive neuroectodermal tumour (CNS-PNET) in Germany and other countries that fulfil national ethic requirements for participation in this registry. These tumours are rare diseases, and many patients are treated outside of clinical trials. The I-HIT-MED registry allows collection of data und biological material from those patients, and provides a basis for standard treatment recommendations and counselling. It aims to improve the international cooperation and the medical knowledge in these rare diseases. Within the I-HIT-MED registry, it is a goal to maintain and improve networks for quality assurance in national groups where they are already established, and to support the implementation in national groups, where there is no quality assurance network yet.

Clinical Trial Description

The following patients can be included in this registry:

Children and adults with

• Medulloblastoma (MB)

• Ependymoma

• CNS-primitive neuroectodermal tumours (CNS-PNET) including CNS neuroblastoma, CNS ganglioneuroblastoma, Medulloepithelioma, Ependymoblastoma, CNS-PNET not otherwise specified (NOS)

• Pineoblastoma

• Pineal parenchymal tumour of intermediate differentiation

• Papillary tumour of the pineal region Who are not included in prospective clinical trials for these conditions

The objectives of this registry are

• To evaluate clinical data on the epidemiology of the above mentioned CNS-neoplasms, and the use and outcome of different treatment regimens, for patients who cannot be included in prospective trials.

• To provide guidelines to establish, maintain and improve systems for quality assurance in the diagnostic assessments and treatment of brain tumours.

To collect biological specimens (tumour, cerebrospinal fluid (CSF), peripheral blood) and perform comprehensive biological studies with the aim to improve our understanding of these diseases and their aetiology, to improve therapy stratification and to improve or develop new treatment options.

• To collect clinical data for cooperative scientific projects (e.g. new follow-up studies, studies on quality of survival, neuropsychology etc.) ;

Related Conditions & MeSH terms

• Childhood Brain Tumor
• Medulloblastoma

• NCT number: NCT02417324
• Study type: Observational [Patient Registry]
• Source: Universitätsklinikum Hamburg-Eppendorf
• Status: Suspended
• Start date: January 2015
• Completion date: December 2029