An observational study in Glioma, Glioneuronal Tumor and Choroid Plexus Tumor, sponsored by European Organisation for Research and Treatment of Cancer - EORTC. Recruiting at 42 sites in 12 countries. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-12-17.
Sponsored by European Organisation for Research and Treatment of Cancer - EORTC · Observational
Every new classification depends on its prognostic power and on the type of treatment given. With the rapid evolution of diagnostic methods and the advance in new treatments, there is much less reliable information available on how patients with newly defined brain tumour entities should be treated and what to expect from the current treatments.
The goal is to determine whether the new 2021 WHO classification, based on cIMPACT-NOW recommendations, results in more homogeneous patient groups than the old 2016 classification. Furthermore, it will help derive provisional guidelines on how patients with these newly defined tumour entities are best treated. These recommendations will be based on the experience of EORTC investigators with chosen treatments and their experience as reported in this data collection report.
224 studies on the registry are indexed under Ependymoma; 35 are open to participants now.
This study's planned enrollment of 1,650 is above the median of 100 across 25 observational studies indexed under Ependymoma.
Browse Ependymoma studies →European Organisation for Research and Treatment of Cancer - EORTC is the lead sponsor of 352 studies on the registry; 23 are open to participants now.
Compared within Ependymoma, this study's primary condition as ClinicalTrials.gg classifies it; the registry's first condition term is Glioma. The counts are of registry records indexed under each term, refreshed daily. How we classify →
Adult patients with newly diagnosed or recurrent primary brain tumours, notably those considered to be very rare brain tumours or rare subtypes of common brain tumours will be included. Patients diagnosed between 2011 and 2025.
Deceased patient:
The clinical data and/or biological material and/or CT/MRI/PET images can be accessed and used if at least one of the following three conditions is met:
Additionally, in all cases the following three points need to be fulfilled:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
A biopsy takes a small piece of tissue to examine. “Archival tissue” is a sample already taken, for example at diagnosis, and kept by the hospital.
Whether a stored sample will do depends on when it was taken, how much there is and what the study needs. Ask whether the study accepts your stored sample or needs a new biopsy.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Biopsy and archival tissue
A biopsy takes a small piece of tissue to examine. “Archival tissue” is a sample already taken, for example at diagnosis, and kept by the hospital.
Whether a stored sample will do depends on when it was taken, how much there is and what the study needs. Ask whether the study accepts your stored sample or needs a new biopsy.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
No intervention
Other: Observational
No intervention;
No intervention; * diffuse midline glioma, H3 K27-altered * diffuse hemispheric glioma, H3 G34-mutant * diffuse paediatric-type high-grade glioma, H3-wildtype and IDH-wildtype * infant-type hemispheric glioma
No intervention
No intervention
No intervention
No intervention
No intervention; * medulloblastoma * other
No intervention
No intervention
No intervention; solitary fibrous tumour hemangioblastomaall all others
No intervention
No intervention
No intervention
No intervention
No intervention
No intervention
The goal is to determine whether the new 2021 WHO classification, based on cIMPACT-NOW recommendations, results in more homogeneous patient groups than the old 2016 classification. Furthermore, it will help derive provisional guidelines on how patients with these newly defined tumour entities are best treated. These recommendations will be based on the experience of EORTC investigators with chosen treatments and their experience as reported in this data collection report.
Best overall and objective response
Recorded from the date start of an anti-tumor therapy until disease progression or start of a new anti-tumor therapy.
Time frame: Followed up for 10 years
Progression free survival
From the date of start of the anti-tumor therapy until the date of first objective progression as determined by the local investigator or the date of patient's death whichever occurs first. Patients will be followed up for 5 years after enrolment.
Time frame: Followed up for 10 years
Overall Survival
Calculated from the date of first pathological diagnosis of the brain tumour; Until the date of death from any cause
Time frame: Followed up for 10 years
Patient and Disease Characteristics
Eligibility, demographics, comorbidities, molecular data
Time frame: At enrolment and updated every 6 months during follow-up, up to 10 years
Comparison of patient and disease characteristics between 2016 vs 2021 WHO classifications
Time frame: At enrolment and during follow-up, up to 10 years
Comparison of treatments and outcomes between classifications
Time frame: From enrolment through follow-up, up to 10 years
Neuroimaging features at diagnosis and progression
Time frame: At initial diagnosis and at each documented progression, up to 10 years
Generation of reference datasets for future trials
Time frame: Throughout study duration, up to 10 years
Molecular profiling of tumour entities
Time frame: At diagnosis and/or progression, up to 10 years (depending on tissue availability)
Characterization of rare/undefined tumours (Cohort 17)
Time frame: At diagnosis and during follow-up, up to 10 years
Next Intervention-Free Survival (NIFS) - Cohort 16 only
Time frame: From start of anti-tumour therapy until next intervention or death, up to 10 years
Started Mar 2023 (actual). Primary completion is estimated for Dec 2027, 57 months after the start.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
European Organisation for Research and Treatment of Cancer - EORTC →