I-HIT-MED registry for medulloblastoma, ependymoma, pineal and choroid plexus tumors
International HIT-MED Registry (I-HIT-MED) for Children, Adolescents, and Adults With Medulloblastoma, Ependymoma, Pineoblastoma, CNS-primitive Neuroectodermal Tumours
This registry collects clinical data and biological samples from children and adults with medulloblastoma, ependymoma, pineal, or choroid plexus tumors to help guide future treatment and research.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Sex | All |
| Sponsor | Universitätsklinikum Hamburg-Eppendorf Academic / other |
| Locations | 57 sites (Aachen and 56 other locations) |
| Trial ID | NCT02417324 on ClinicalTrials.gov |
What this trial studies
The I-HIT-MED registry prospectively enrolls children and adults diagnosed since 01.01.2012 with medulloblastoma, ependymoma, pineal tumours, or choroid plexus tumours who are not in a concurrent prospective therapeutic trial. It collects standardized clinical information, neuroradiology, pathology and molecular data and, where allowed, stores biological specimens such as tumour tissue, CSF, and blood. The registry aims to maintain and expand quality-assurance networks across participating national groups and to enable long-term follow-up including neuropsychological and patient-centered outcomes. Data and samples contributed by participating centers support development of standard treatment recommendations and collaborative biological research.
Who should consider this trial
Good fit: Children and adults of any age with a diagnosis of medulloblastoma, ependymoma, pineal tumour, or choroid plexus tumour (first diagnosis after 01.01.2012) who are not enrolled in a concurrent clinical trial and who can provide informed consent and local ethical approval for data and sample transfer are ideal candidates.
Not a fit: Patients already enrolled in another clinical trial for the same diagnosis, those without valid local ethical approval or consent, and certain adult cases of tumour subtypes restricted to childhood registration may not benefit from or be eligible for inclusion.
Why it matters
Potential benefit: If successful, the registry could improve diagnostic and treatment recommendations, identify molecular targets for future therapies, and enhance long-term care and counselling for patients with these rare tumours.
How similar studies have performed: Other national and international registries for pediatric and rare brain tumours have successfully informed tumor classification, treatment patterns, and research priorities, so this registry follows an established and useful approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 * No inclusion into a prospective clinical trial for the same diagnosis, due to non-eligibility, national lack of trial approval, or individual refusal of participation. * 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. Exclusion Criteria: * Registration in another clinical trial for the same diagnosis (relapse is defined as a second diagnosis). * Lack of valid ethical committee approval.
Where this trial is running
Aachen and 56 other locations
- University Hospital Aachen — Aachen, Germany (Recruiting)
- Klinikum Augsburg — Augsburg, Germany (Recruiting)
- Helios Klinikum Berlin-Buch — Berlin, Germany (Recruiting)
- Charite Campus, University of Berlin — Berlin, Germany (Recruiting)
- Evangelisches Krankenhaus Bielefeld — Bielefeld, Germany (Recruiting)
- Klinikum Braunschweig — Braunschweig, Germany (Recruiting)
- Klinikum Bremen-Mitte — Bremen, Germany (Recruiting)
- Klinikum Chemnitz — Chemnitz, Germany (Recruiting)
- University Hospital Cologne — Cologne, Germany (Not_yet_recruiting)
- Carl-Thiem-Klinikum Cottbus — Cottbus, Germany (Recruiting)
- Vestische Kinder- und Jugendklinik, University Witten/Herdecke — Datteln, Germany (Active_not_recruiting)
- Klinikum Dortmund — Dortmund, Germany (Recruiting)
- University Hospital Dresden — Dresden, Germany (Recruiting)
- Klinikum Duisburg — Duisburg, Germany (Active_not_recruiting)
- Universitäts-Kinderklinik Düsseldorf — Düsseldorf, Germany (Recruiting)
- HELIOS Klinikum-Erfurt — Erfurt, Germany (Recruiting)
- University Hospital Erlangen — Erlangen, Germany (Recruiting)
- University Hospital Essen — Essen, Germany (Recruiting)
- University Hospital Frankfurt/Main — Frankfurt, Germany (Recruiting)
- University Hospital Freiburg — Freiburg im Breisgau, Germany (Recruiting)
- Universitätsklinikum Gießen und Marburg — Giessen, Germany (Recruiting)
- Georg-August-Universität Göttingen — Göttingen, Germany (Recruiting)
- University Hospital Greifswald — Greifswald, Germany (Recruiting)
- University Hospital Halle/Saale — Halle, Germany (Recruiting)
- University Medical Center Hamburg-Eppendorf — Hamburg, Germany (Recruiting)
- Medizinische Hochschule Hannover — Hanover, Germany (Recruiting)
- Angelika-Lautenschläger-Klinik — Heidelberg, Germany (Recruiting)
- SLK-Kliniken — Heilbronn, Germany (Recruiting)
- Gemeinschaftskrankenhaus Herdecke — Herdecke, Germany (Recruiting)
- University Hospital Homburg/Saar — Homburg, Germany (Recruiting)
- University Hopsital Jena — Jena, Germany (Recruiting)
- Städtisches Klinikum Karlsruhe — Karlsruhe, Germany (Recruiting)
- Klinikum Kassel — Kassel, Germany (Active_not_recruiting)
- UK-SH Campus Kiel — Kiel, Germany (Recruiting)
- Gemeinschaftsklinikum Koblenz-Mayen — Koblenz, Germany (Recruiting)
- HELIOS Klinikum Krefeld — Krefeld, Germany (Not_yet_recruiting)
- University Hospital Leipzig — Leipzig, Germany (Active_not_recruiting)
- Universitätsklinikum Schleswig-Holstein — Lübeck, Germany (Recruiting)
- University Hospital Magdeburg — Magdeburg, Germany (Recruiting)
- University Hospital Mainz — Mainz, Germany (Recruiting)
- University Hospital Mannheim — Mannheim, Germany (Recruiting)
- Johannes Wesling Klinikum Minden — Minden, Germany (Recruiting)
- Universität München - von Haunersches — München, Germany (Recruiting)
- Klinikum Schwabing, Pediatric Hospital of Technical University — München, Germany (Recruiting)
- Universitätsklinikum Münster — Münster, Germany (Recruiting)
- Cnopf'sche Kinderklinik — Nuremberg, Germany (Recruiting)
- Klinikum Oldenburg — Oldenburg, Germany (Recruiting)
- University Hospital Regensburg — Regensburg, Germany (Recruiting)
- University Hospital Rostock — Rostock, Germany (Recruiting)
- Asklepios Klinik Sankt Augustin — Sankt Augustin, Germany (Recruiting)
+7 more sites — see ClinicalTrials.gov for the full list.
Study contacts
- Principal investigator: Stefan Rutkowski, Prof. — Universitätsklinikum Hamburg-Eppendorf
- Study coordinator: Stefan Rutkowski, Prof.
- Email: hitchem@uke.de
- Phone: +49-40-7410
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.