NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) is a program within the Rare Tumor Patient Engagement Network, an initiative supported by the Cancer MoonshotSM. NCI-CONNECT is managed by the NCI Center for Cancer Research’s Neuro-Oncology Branch.
NCI-CONNECT aims to advance the understanding of adult rare central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.
Primary CNS cancers are rare tumors that start in the brain and spinal cord. They account for less than two percent of all cancers diagnosed each year in the United States. There are over 130 different CNS tumor types. NCI-CONNECT started with 12 select tumor types, each with less than 2,000 people diagnosed a year in the United States. It has expanded its selection to include tumor subtypes based on molecular findings and will continue to do so as new discoveries are made.
Since the NCI-CONNECT select tumors are rare, patients and researchers face unique challenges. Patients struggle to find expert care and treatments. Researchers struggle to identify enough patients to conduct research. NCI-CONNECT intends to address these challenges and unmet needs by connecting patients, providers, researchers, and community organizations to work in partnership.
- Patients: NCI-CONNECT wants to connect you with our resources and network of health care professionals.
- Providers: NCI-CONNECT wants to work with you to identify patients eligible for clinical trials and studies.
- Advocates: NCI-CONNECT wants to partner with your organization to share resources and educational information.
NCI-CONNECT is a collaborative, innovative, and adaptive program with goals to:
- Develop a network of national and international institutions to study select rare CNS tumors
- Collect, analyze, and share data to enable a better understanding of these select rare CNS tumors and develop standards of care
- Use the network to investigate new therapies and methods to improve patient outcomes