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About NCI-CONNECT

Credit: NCI-CONNECT Staff

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.

Building Partnerships

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

NCI-CONNECT - A Rare Brain and Spine Tumor Network Overview Video

Goals

NCI-CONNECT is a collaborative, innovative, and adaptive program with goals to: 

  1. Develop a network of national and international institutions to study selected rare CNS tumors.
  2. Collect, analyze, and share data to enable a better understanding of the selected rare CNS tumors and develop standard of care.
  3. 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.

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