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

Overview

The I-HIT-MED registry registers clinical of children and adults with medulloblastoma, ependymoma, pineal tumours, or choroid plexus tumours 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.

The following patients can be included in this registry: Children and adults with * Medulloblastoma (MB) * Ependymoma * Pineal Tumours * Chroroid plexus tumours Objectives of this registry: To prospectively evaluate the clinical courses of patients with the eligible brain tumours, considering neuroradiological, pathological, and molecular / biological characteristics of the tumour and individual standard treatment data. To collect biological specimens (tumour, CSF, peripheral blood) or their data to perform biological studies on * disease aetiology * molecular / biological risk factors influencing treatment response and survival * potential targets for drug treatment in future patients To assess the use of systems for quality assurance during diagnosis and treatment of brain tumours. To assess long-term follow-up, quality of survival, neuropsychology, and other patient-centred research in these very rare tumour subtypes in the context of the registry or in cooperation with external collaborators.

Conditions