International Rare Brain Tumor Registry
Rare brain tumors are unique due to their infrequency and complexity. They pose significant challenges in diagnosis and treatment. Typically affecting fewer than 200,000 people in the U.S., these tumors demand specialized research and targeted care.
The International Rare Brain Tumor Registry is a collaborative effort aimed at enhancing knowledge of rare brain tumors. By collecting and analyzing rare biospecimens and clinical data, the initiative aims to devise new treatment plans to improve health outcomes.
Our Providers
Our pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs.
How does the International Rare Brain Tumor Registry work?
The aim of the registry is to develop a repository biobank for current and future research in children, adolescents and young adults with rare brain tumors. The registry collects clinical data and, optionally, biospecimens (including tumor, cerebrospinal fluid and blood) from newly diagnosed or prior patients with rare brain tumor diagnoses.
Biospecimens are used for:
- Generation of cell lines for drug studies
- Genetic, molecular and histopathologic studies to confirm diagnoses
- Genomic studies to further understand tumor-causing processes
Clinical data including imaging, treatment information, and pathology reports are used to:
- Improve clinical recognition and develop specialized diagnostic tools
- Develop new therapies for rare brain tumor patients
What is a biobank?
Biobanks gather samples from individuals and store them securely. These samples are de-identified, meaning personal information is removed, to protect privacy while allowing researchers to analyze genetic material, enhancing our understanding of diseases.
Our Mission
The overarching objective of the registry is to deepen our understanding of rare brain tumors and to develop rational and personalized treatment strategies for individuals with these rare entities. We aim to enhance health outcomes for young individuals with rare brain tumors by:
Supporting families and researchers
Advancing understanding and treatments
Building a foundation for future research
What Patients and Families Should Know
When your child participates in the International Rare Brain Tumor Registry, you’re enabling the registry collaborators to learn more and translate research into new treatments for children with rare brain tumors.
Key Info for Providers and Researchers
We invite physicians and researchers to enroll their patients in the registry. Once your patient is enrolled, you’ll be able to collect their key biological, clinical and radiological data and enter it into the registry.
Our Partners
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