About NCI-CONNECT
NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) is a program that aims to advance our understanding of rare central nervous system (CNS) cancers in adults by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.
Primary CNS cancers are tumors that start in the brain and spinal cord. All primary adult CNS tumors are rare. They account for less than 2 percent of all cancers diagnosed each year in the United States and include 130 different tumor types. NCI-CONNECT started with 12 of the rarest tumor types, each with fewer than 2,000 people diagnosed per year. NCI-CONNECT has since expanded its selection to include tumor subtypes based on molecular findings—and will continue to do so as new discoveries are made.
The low incidence rate of these select rare CNS tumors means patients and researchers face unique challenges: Patients struggle to find expert care and treatments, while 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.
View the NCI-CONNECT Website >
Tumor Types
NCI-CONNECT focuses on select rare CNS tumor types in adults:
- Atypical Teratoid/Rhabdoid Tumor (AT/RT)
- Choroid Plexus Tumors
- Diffuse Midline Gliomas
- Ependymoma
- Gliomatosis Cerebri
- Gliosarcoma
- Medulloblastoma
- Meningioma (High Grade)
- Oligodendroglioma / Other IDH-Mutated Tumors
- Pineal Region Tumors
- Pleomorphic Xanthoastrocytoma (PXA) / Other BRAF-Altered Tumors
- Primitive Neuro-Ectodermal Tumors (PNET)
Clinical Studies
NCI-CONNECT has a number of studies that are open for adult patients with rare CNS cancers.
Explore NCI-CONNECT's Clinical Studies >
Receive NCI-CONNECT Updates
Receive the latest news in adult rare CNS cancer research, care, and treatment by:
- Subscribing to the NCI-CONNECT newsletter
- Viewing the NCI-CONNECTions Blog
- Following us on X (formerly Twitter) @NIHBrainTumor
Connect with Others
Join our Facebook page, NCI-CONNECT Community, to connect with other patients and caregivers.
Contact us at NCICONNECT@mail.nih.gov or call (240) 760-6530
About the Rare Tumor Patient Engagement Network
NCI-CONNECT is a program within the Rare Tumor Patient Engagement Network (RTPEN), an initiative supported by the National Cancer Moonshot. RTPEN aims to advance research and discover new treatments for rare tumors through a collaborative network of national and international institutions that will provide expertise, personalized health care and education to patients with rare tumors. As part of RTPEN, NCI-CONNECT focuses on rare CNS tumors and is managed by the NCI Center for Cancer Research’s Neuro-Oncology Branch.