Primary CNS cancers are tumors that start in the brain and spinal cord. They account for less than 2% of all cancers diagnosed a year in the United States, with over 130 different types. Although all primary adult CNS tumors can be considered rare, NCI-CONNECT is starting with 12 types, each with less than 2,000 people diagnosed a year. (view pdf)

The low incident rate of these 12 tumors means patients and researchers face unique challenges. Patients struggle to find expert care and treatments. Researchers have limited resources to study the disease and develop new therapies.

NCI-CONNECT intends to address these challenges and unmet needs by connecting patients, providers, researchers and community organizations to work in partnership.


NCI-CONNECT is a collaborative, innovative and adaptive program. Its goals are to:

* Develop an infrastructure across a network of national and international sites to study select rare CNS tumors.

* Collect, analyze and share data to promote discovery and improve understanding of select rare CNS tumors.

* Use the network to facilitate the translation of discoveries into new therapies and methods to improve patient outcomes.

NCI-CONNECT selected rare adult CNS tumor types:

*Atypical Teratoid Rhabdoid Tumor (ATRT)
*Brainstem and Midline Gliomas
*Choroid Plexus Tumors
*Gliomatosis Cerebri
*Meningioma (High Grade)
*Oligodendroglioma / Anaplastic Oligodendroglioma
*Pineal Region Tumors
*Pleomorphic Xanthroastrocytoma / Anaplastic Pleomorphic Xanthroastrocytoma
*PNET (Supratentorial Embryonal Tumor)
*Primary CNS Sarcoma / Secondary CNS Sarcoma (Gliosarcoma)

Current Studies
The Comprehensive Oncology Network Evaluating Rare CNS Tumors, or NCI-CONNECT has a number of studies that are open and available for participation. If you have a Pineal tumour and would like a second opinion and would like to partake in research with the possibility of treatment please view these 2 studies:

Online Study
Outcomes and Risk Project for Patients with Rare CNS Cancers
The project aims to improve our understanding of risk factors associated with the occurrence of rare CNS tumors. Research shows that certain risk factors may increase a person’s chances of developing cancer. Factors can include exposure to chemicals or other substances, personal and family medical history. Through the use of an online platform, participants and families from across the world will be able to participate to provide information that can help clarify the presentation and ongoing health of individuals with these rare diseases. The study represents an ongoing effort to evaluate outcomes in a large group of participants with these rare tumors. Enrollment Form >

Assessment at the NIH
Evaluation of the Natural History and Specimen Banking for Patients with CNS Cancers
The study objective is to better understand brain and spinal cord tumors and uncover areas for further research. It also aims to connect patients with doctors who can help them manage their illness and give them new treatment options. Learn more