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Global brain tumor registry aims to unlock secrets of rare childhood cancers

NCT ID NCT02417324

Knowledge-focused Sponsor: Universitätsklinikum Hamburg-Eppendorf Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This international registry collects medical data and biological samples from children and adults with rare brain tumors like medulloblastoma and ependymoma. By gathering information from patients not in clinical trials, researchers hope to improve treatment recommendations and international cooperation. The study does not test any new drug or therapy.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could lead to better treatment guidelines and improved understanding of rare brain tumors.
What could go wrong
This is an observational registry, not a treatment trial. It collects information but does not test any new therapy, so direct patient benefits may take years.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 500 people

The number the study aims to enrol. It can still change while the study runs.

Start date

Jan 2015

Expected to finish

Dec 2029

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

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

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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Conditions

The condition(s) this trial relates to.

central nervous system primitive neuroectodermal neoplasm choroid plexus neoplasm ependymoma medulloblastoma pineal body neoplasm Pinealoma pineoblastoma

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Childhood brain tumor

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    52 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Angelika-Lautenschläger-Klinik

    RECRUITING

    Heidelberg, 69120, Germany

  • Asklepios Klinik Sankt Augustin

    RECRUITING

    Sankt Augustin, 53757, Germany

  • Carl-Thiem-Klinikum Cottbus

    RECRUITING

    Cottbus, 03048, Germany

  • Charite Campus, University of Berlin

    RECRUITING

    Berlin, 13353, Germany

  • Cnopf'sche Kinderklinik

    RECRUITING

    Nuremberg, 90419, Germany

  • Dr. Horst Schmidt Kliniken

    WITHDRAWN

    Wiesbaden, 65199, Germany

  • Evangelisches Krankenhaus Bielefeld

    RECRUITING

    Bielefeld, 33617, Germany

  • Gemeinschaftsklinikum Koblenz-Mayen

    RECRUITING

    Koblenz, 56073, Germany

  • Gemeinschaftskrankenhaus Herdecke

    RECRUITING

    Herdecke, 58313, Germany

  • Georg-August-Universität Göttingen

    RECRUITING

    Göttingen, 37075, Germany

  • HELIOS Klinikum Krefeld

    NOT_YET_RECRUITING

    Krefeld, 47805, Germany

  • HELIOS Klinikum-Erfurt

    RECRUITING

    Erfurt, 99089, Germany

  • Helios Kliniken Schwerin

    RECRUITING

    Schwerin, 19049, Germany

  • Helios Klinikum Berlin-Buch

    RECRUITING

    Berlin, 13125, Germany

  • Johannes Wesling Klinikum Minden

    RECRUITING

    Minden, 32429, Germany

  • Klinikum Augsburg

    RECRUITING

    Augsburg, 86156, Germany

  • Klinikum Braunschweig

    RECRUITING

    Braunschweig, 38118, Germany

  • Klinikum Bremen-Mitte

    RECRUITING

    Bremen, 28177, Germany

  • Klinikum Chemnitz

    RECRUITING

    Chemnitz, 09116, Germany

  • Klinikum Dortmund

    RECRUITING

    Dortmund, 44137, Germany

  • Klinikum Duisburg

    ACTIVE_NOT_RECRUITING

    Duisburg, 47055, Germany

  • Klinikum Kassel

    ACTIVE_NOT_RECRUITING

    Kassel, 34125, Germany

  • Klinikum Oldenburg

    RECRUITING

    Oldenburg, 26133, Germany

  • Klinikum Schwabing, Pediatric Hospital of Technical University

    RECRUITING

    München, 80804, Germany

  • Klinikum Stuttgart

    RECRUITING

    Stuttgart, 70176, Germany

  • Klinikum der Stadt Wolfsburg

    RECRUITING

    Wolfsburg, 38440, Germany

  • Medizinische Hochschule Hannover

    RECRUITING

    Hanover, 30625, Germany

  • SLK-Kliniken

    RECRUITING

    Heilbronn, 74078, Germany

  • Städtisches Klinikum Karlsruhe

    RECRUITING

    Karlsruhe, 76133, Germany

  • UK-SH Campus Kiel

    RECRUITING

    Kiel, 24105, Germany

  • University Hopsital Jena

    RECRUITING

    Jena, 07740, Germany

  • University Hospital Aachen

    RECRUITING

    Aachen, 52074, Germany

  • University Hospital Cologne

    NOT_YET_RECRUITING

    Cologne, 50924, Germany

  • University Hospital Dresden

    RECRUITING

    Dresden, 01307, 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

  • University Hospital Greifswald

    RECRUITING

    Greifswald, 17475, Germany

  • University Hospital Halle/Saale

    RECRUITING

    Halle, 06120, Germany

  • University Hospital Homburg/Saar

    RECRUITING

    Homburg, 66421, Germany

  • University Hospital Leipzig

    ACTIVE_NOT_RECRUITING

    Leipzig, 04103, Germany

  • University Hospital Magdeburg

    RECRUITING

    Magdeburg, 39120, Germany

  • University Hospital Mainz

    RECRUITING

    Mainz, 55131, Germany

  • University Hospital Mannheim

    RECRUITING

    Mannheim, 68167, Germany

  • University Hospital Regensburg

    RECRUITING

    Regensburg, 93053, Germany

  • University Hospital Rostock

    RECRUITING

    Rostock, 18057, Germany

  • University Hospital Ulm

    RECRUITING

    Ulm, 89075, Germany

  • University Medical Center Hamburg-Eppendorf

    RECRUITING

    Hamburg, 20246, Germany

  • Universität München - von Haunersches

    RECRUITING

    München, 80337, Germany

  • Universitäts-Kinderklinik Düsseldorf

    RECRUITING

    Düsseldorf, 40225, Germany

  • Universitätsklinik Tübingen

    RECRUITING

    Tübingen, 72076, Germany

  • Universitätsklinikum Gießen und Marburg

    RECRUITING

    Giessen, 35392, Germany

  • Universitätsklinikum Münster

    RECRUITING

    Münster, 48149, Germany

  • Universitätsklinikum Schleswig-Holstein

    RECRUITING

    Lübeck, 23538, Germany

  • Universotätsklinikum Würzburg

    RECRUITING

    Würzburg, 97080, Germany

  • Vestische Kinder- und Jugendklinik, University Witten/Herdecke

    ACTIVE_NOT_RECRUITING

    Datteln, 45711, Germany

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