About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
all patients with above mentioned diagnosis of all ages (except for ependymoma WHO I°, pineal parenchymal tumour of intermediate differentiation and papillary tumour of the pineal region, who will be registered only if primary diagnosis was before the 18th birthday)
any localisation of the primary tumour
all clinical stages
First diagnosis after 01.01.2012
Disqualifiers
Registration in another clinical trial for the same diagnosis (relapse is defined as a second diagnosis).
Lack of valid ethical committee approval.
Trial population
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
Trial design
Cohort
Prospective
Treatments tested in this trial
Not listed
Trial groups
Trial outcomes
Primary outcomes
Event free survival
Due to the explorative character of the registry, outcome measures are not strictly defined. We added the most common outcome measures.
Secondary outcomes
Pattern of relapse
Overall survival
Sponsors and contacts
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