NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) aims to advance the understanding of rare adult 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 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. There are over 130 different types, all of them rare. NCI-CONNECT is starting with 12 tumor types, each with less than 2,000 people diagnosed a year.
Since these 12 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 healthcare 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 selected rare CNS tumors.
- Collect, analyze, and share data to enable a better understanding of the selected rare CNS tumors and develop standard of care.
- Use the network to investigate new therapies and methods to improve patient outcomes.
NCI-CONNECT is a program within the Rare Tumor Patient Engagement Network (RTPEN), an initiative supported by the 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 healthcare, 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.