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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
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
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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| Pattern of relapse | 10 years | |
| Overall survival | 10 years |
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Inclusion Criteria:
Exclusion Criteria:
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Children and adults with
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Stefan Rutkowski, Prof. | Contact | +49-40-7410 | 58200 | hitchem@uke.de |
| Martin Mynarek, MD | Contact | +49-40-7410 | 58200 | m.mynarek@uke.de |
| Name | Affiliation | Role |
|---|---|---|
| Stefan Rutkowski, Prof. | Universitätsklinikum Hamburg-Eppendorf | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University Hospital Aachen | Recruiting | Aachen | 52074 | Germany | ||
| Klinikum Augsburg |
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Tumour samples
| Recruiting |
| Augsburg |
| 86156 |
| Germany |
| Helios Klinikum Berlin-Buch | Recruiting | Berlin | 13125 | Germany |
| Charite Campus, University of Berlin | Recruiting | Berlin | 13353 | Germany |
| Evangelisches Krankenhaus Bielefeld | Recruiting | Bielefeld | 33617 | Germany |
| Klinikum Braunschweig | Recruiting | Braunschweig | 38118 | Germany |
| Klinikum Bremen-Mitte | Recruiting | Bremen | 28177 | Germany |
| Klinikum Chemnitz | Recruiting | Chemnitz | 09116 | Germany |
| University Hospital Cologne | Not yet recruiting | Cologne | 50924 | Germany |
| Carl-Thiem-Klinikum Cottbus | Recruiting | Cottbus | 03048 | Germany |
| Vestische Kinder- und Jugendklinik, University Witten/Herdecke | Active, not recruiting | Datteln | 45711 | Germany |
| Klinikum Dortmund | Recruiting | Dortmund | 44137 | Germany |
| University Hospital Dresden | Recruiting | Dresden | 01307 | Germany |
| Klinikum Duisburg | Active, not recruiting | Duisburg | 47055 | Germany |
| Universitäts-Kinderklinik Düsseldorf | Recruiting | Düsseldorf | 40225 | Germany |
| HELIOS Klinikum-Erfurt | Recruiting | Erfurt | 99089 | Germany |
| University Hospital Erlangen | Recruiting | Erlangen | 91054 | Germany |
| University Hospital Essen | Recruiting | Essen | 45147 | Germany |
| University Hospital Frankfurt/Main | Recruiting | Frankfurt | 60590 | Germany |
| University Hospital Freiburg | Recruiting | Freiburg im Breisgau | 79106 | Germany |
| Universitätsklinikum Gießen und Marburg | Recruiting | Giessen | 35392 | Germany |
| Georg-August-Universität Göttingen | Recruiting | Göttingen | 37075 | Germany |
| University Hospital Greifswald | Recruiting | Greifswald | 17475 | Germany |
| University Hospital Halle/Saale | Recruiting | Halle | 06120 | Germany |
| University Medical Center Hamburg-Eppendorf | Recruiting | Hamburg | 20246 | Germany |
|
| Medizinische Hochschule Hannover | Recruiting | Hanover | 30625 | Germany |
| Angelika-Lautenschläger-Klinik | Recruiting | Heidelberg | 69120 | Germany |
| SLK-Kliniken | Recruiting | Heilbronn | 74078 | Germany |
| Gemeinschaftskrankenhaus Herdecke | Recruiting | Herdecke | 58313 | Germany |
| University Hospital Homburg/Saar | Recruiting | Homburg | 66421 | Germany |
| University Hopsital Jena | Recruiting | Jena | 07740 | Germany |
| Städtisches Klinikum Karlsruhe | Recruiting | Karlsruhe | 76133 | Germany |
| Klinikum Kassel | Active, not recruiting | Kassel | 34125 | Germany |
| UK-SH Campus Kiel | Recruiting | Kiel | 24105 | Germany |
| Gemeinschaftsklinikum Koblenz-Mayen | Recruiting | Koblenz | 56073 | Germany |
| HELIOS Klinikum Krefeld | Not yet recruiting | Krefeld | 47805 | Germany |
| University Hospital Leipzig | Active, not recruiting | Leipzig | 04103 | Germany |
| Universitätsklinikum Schleswig-Holstein | Recruiting | Lübeck | 23538 | Germany |
| University Hospital Magdeburg | Recruiting | Magdeburg | 39120 | Germany |
| University Hospital Mainz | Recruiting | Mainz | 55131 | Germany |
| University Hospital Mannheim | Recruiting | Mannheim | 68167 | Germany |
| Johannes Wesling Klinikum Minden | Recruiting | Minden | 32429 | Germany |
| Universität München - von Haunersches | Recruiting | München | 80337 | Germany |
| Klinikum Schwabing, Pediatric Hospital of Technical University | Recruiting | München | 80804 | Germany |
| Universitätsklinikum Münster | Recruiting | Münster | 48149 | Germany |
| Cnopf'sche Kinderklinik | Recruiting | Nuremberg | 90419 | Germany |
| Klinikum Oldenburg | Recruiting | Oldenburg | 26133 | Germany |
| University Hospital Regensburg | Recruiting | Regensburg | 93053 | Germany |
| University Hospital Rostock | Recruiting | Rostock | 18057 | Germany |
| Asklepios Klinik Sankt Augustin | Recruiting | Sankt Augustin | 53757 | Germany |
| Helios Kliniken Schwerin | Recruiting | Schwerin | 19049 | Germany |
| Klinikum Stuttgart | Recruiting | Stuttgart | 70176 | Germany |
| Universitätsklinik Tübingen | Recruiting | Tübingen | 72076 | Germany |
| University Hospital Ulm | Recruiting | Ulm | 89075 | Germany |
| Dr. Horst Schmidt Kliniken | Withdrawn | Wiesbaden | 65199 | Germany |
| Klinikum der Stadt Wolfsburg | Recruiting | Wolfsburg | 38440 | Germany |
| Universotätsklinikum Würzburg | Recruiting | Würzburg | 97080 | Germany |
| ID | Term |
|---|---|
| D008527 | Medulloblastoma |
| D004806 | Ependymoma |
| D010871 | Pinealoma |
| ID | Term |
|---|---|
| D005910 | Glioma |
| D018302 | Neoplasms, Neuroepithelial |
| D017599 | Neuroectodermal Tumors |
| D009373 | Neoplasms, Germ Cell and Embryonal |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D018242 | Neuroectodermal Tumors, Primitive |
| D009375 | Neoplasms, Glandular and Epithelial |
| D009380 | Neoplasms, Nerve Tissue |
| D001932 | Brain Neoplasms |
| D016543 | Central Nervous System Neoplasms |
| D009423 | Nervous System Neoplasms |
| D009371 | Neoplasms by Site |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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