International HIT-MED Registry for Children, Adolescents, and Adults with Medulloblastoma, Ependymoma, Pineal Tumours, or Choroid Plexus Tumours

What this Trial Is About

Researchers are collecting detailed clinical and biological data from children and adults diagnosed with rare brain tumors, including medulloblastoma, ependymoma, pineal tumors, and choroid plexus tumors. This international registry aims to improve understanding of these rare diseases, support quality assurance networks, and enhance collaboration across countries. The registry focuses on patients treated outside of clinical trials to help establish standard treatment recommendations and counseling. Participants provide information on tumor characteristics, treatment details, and biological samples such as tumor tissue, cerebrospinal fluid, and blood. The registry evaluates disease causes, molecular risk factors, and potential targets for future drug treatments. It also monitors the use of quality assurance systems during diagnosis and treatment and supports long-term follow-up studies on survival, neuropsychology, and patient-centered outcomes. During participation, patients contribute data over time, allowing researchers to track clinical courses and treatment responses. The registry assesses long-term outcomes including event-free survival, relapse patterns, and overall survival for up to 10 years. Ethical approval and informed consent are required, ensuring data is collected responsibly. This ongoing observational study provides valuable insights to improve care for patients with these rare brain tumors.

International HIT-MED Registry (I-HIT-MED)