International HIT-MED Registry (I-HIT-MED)
1 other identifier
observational
500
1 country
57
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jan 2015
Longer than P75 for all trials
57 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
January 1, 2015
CompletedFirst Submitted
Initial submission to the registry
February 4, 2015
CompletedFirst Posted
Study publicly available on registry
April 15, 2015
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 1, 2029
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 1, 2029
December 4, 2025
November 1, 2025
14.9 years
February 4, 2015
November 27, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Event free survival
Due to the explorative character of the registry, outcome measures are not strictly defined. We added the most common outcome measures.
10 years
Secondary Outcomes (2)
Pattern of relapse
10 years
Overall survival
10 years
Eligibility Criteria
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
You may qualify if:
- 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
- Written informed consent for data transfer and tumour sample submission according to the laws of each participating country is necessary.
- National and/ or local ethical committee approval according to the laws of each participating country is necessary.
You may not qualify if:
- Registration in another clinical trial for the same diagnosis (relapse is defined as a second diagnosis).
- Lack of valid ethical committee approval.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (57)
University Hospital Aachen
Aachen, 52074, Germany
Klinikum Augsburg
Augsburg, 86156, Germany
Helios Klinikum Berlin-Buch
Berlin, 13125, Germany
Charite Campus, University of Berlin
Berlin, 13353, Germany
Evangelisches Krankenhaus Bielefeld
Bielefeld, 33617, Germany
Klinikum Braunschweig
Braunschweig, 38118, Germany
Klinikum Bremen-Mitte
Bremen, 28177, Germany
Klinikum Chemnitz
Chemnitz, 09116, Germany
University Hospital Cologne
Cologne, 50924, Germany
Carl-Thiem-Klinikum Cottbus
Cottbus, 03048, Germany
Vestische Kinder- und Jugendklinik, University Witten/Herdecke
Datteln, 45711, Germany
Klinikum Dortmund
Dortmund, 44137, Germany
University Hospital Dresden
Dresden, 01307, Germany
Klinikum Duisburg
Duisburg, 47055, Germany
Universitäts-Kinderklinik Düsseldorf
Düsseldorf, 40225, Germany
HELIOS Klinikum-Erfurt
Erfurt, 99089, Germany
University Hospital Erlangen
Erlangen, 91054, Germany
University Hospital Essen
Essen, 45147, Germany
University Hospital Frankfurt/Main
Frankfurt, 60590, Germany
University Hospital Freiburg
Freiburg im Breisgau, 79106, Germany
Universitätsklinikum Gießen und Marburg
Giessen, 35392, Germany
Georg-August-Universität Göttingen
Göttingen, 37075, Germany
University Hospital Greifswald
Greifswald, 17475, Germany
University Hospital Halle/Saale
Halle, 06120, Germany
University Medical Center Hamburg-Eppendorf
Hamburg, 20246, Germany
Medizinische Hochschule Hannover
Hanover, 30625, Germany
Angelika-Lautenschläger-Klinik
Heidelberg, 69120, Germany
SLK-Kliniken
Heilbronn, 74078, Germany
Gemeinschaftskrankenhaus Herdecke
Herdecke, 58313, Germany
University Hospital Homburg/Saar
Homburg, 66421, Germany
University Hopsital Jena
Jena, 07740, Germany
Städtisches Klinikum Karlsruhe
Karlsruhe, 76133, Germany
Klinikum Kassel
Kassel, 34125, Germany
UK-SH Campus Kiel
Kiel, 24105, Germany
Gemeinschaftsklinikum Koblenz-Mayen
Koblenz, 56073, Germany
HELIOS Klinikum Krefeld
Krefeld, 47805, Germany
University Hospital Leipzig
Leipzig, 04103, Germany
Universitätsklinikum Schleswig-Holstein
Lübeck, 23538, Germany
University Hospital Magdeburg
Magdeburg, 39120, Germany
University Hospital Mainz
Mainz, 55131, Germany
University Hospital Mannheim
Mannheim, 68167, Germany
Johannes Wesling Klinikum Minden
Minden, 32429, Germany
Universität München - von Haunersches
München, 80337, Germany
Klinikum Schwabing, Pediatric Hospital of Technical University
München, 80804, Germany
Universitätsklinikum Münster
Münster, 48149, Germany
Cnopf'sche Kinderklinik
Nuremberg, 90419, Germany
Klinikum Oldenburg
Oldenburg, 26133, Germany
University Hospital Regensburg
Regensburg, 93053, Germany
University Hospital Rostock
Rostock, 18057, Germany
Asklepios Klinik Sankt Augustin
Sankt Augustin, 53757, Germany
Helios Kliniken Schwerin
Schwerin, 19049, Germany
Klinikum Stuttgart
Stuttgart, 70176, Germany
Universitätsklinik Tübingen
Tübingen, 72076, Germany
University Hospital Ulm
Ulm, 89075, Germany
Dr. Horst Schmidt Kliniken
Wiesbaden, 65199, Germany
Klinikum der Stadt Wolfsburg
Wolfsburg, 38440, Germany
Universotätsklinikum Würzburg
Würzburg, 97080, Germany
Biospecimen
Tumour samples
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Stefan Rutkowski, Prof.
Universitätsklinikum Hamburg-Eppendorf
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 5 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
February 4, 2015
First Posted
April 15, 2015
Study Start
January 1, 2015
Primary Completion (Estimated)
December 1, 2029
Study Completion (Estimated)
December 1, 2029
Last Updated
December 4, 2025
Record last verified: 2025-11