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. They account for less than 2% of all cancers diagnosed each year in the United States, and include 130 different tumor types. Although all primary adult CNS tumors can be considered rare, NCI-CONNECT is starting with 12 of the rarest tumor types (listed below), each with fewer than 2,000 people diagnosed a year. The low incidence rate of these 12 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.
NCI-CONNECT focuses on 12 rare CNS tumor types in adults:
- Atypical Teratoid Rhabdoid Tumor (ATRT)
- Choroid Plexus Tumors
- Diffuse Midline Gliomas
- Gliomatosis Cerebri
- Meningioma (High Grade)
- Pineal Region Tumors
- Pleomorphic Xanthoastrocytoma (PXA) and Anaplastic Pleomorphic Xanthoastrocytoma (APXA)
- Primitive Neuro-Ectodermal Tumors (PNET)
NCI-CONNECT has a number of studies that are open for adult patients with rare CNS cancers. View the NCI-CONNECT website to learn more.
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 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.
NCI-CONNECT as part of RTPEN focuses on rare central nervous system tumors and is managed at the National Institutes of Health, National Cancer Institute, Center for Cancer Research, Neuro-Oncology Branch.