NCI-CONNECT Aims to Advance the Study of Rare Brain and Spine Cancers

By 27th May 2019 IBTA News

NCI-CONNECT features in this year’s edition of 'Brain Tumour' magazine (pages 20-23), now available in hard copy or online here.

In October 2017, Mark Gilbert, M.D., Chief, and Terri Armstrong, Ph.D., Deputy Chief of the Neuro-Oncology Branch at the National Cancer Institute, National Institutes of Health, launched NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumours) to advance the understanding of rare adult central nervous system (CNS) cancers.

In November 2018, the IBTA’s Chair, Kathy Oliver, participated in an NCI-CONNECT workshop at NIH in Bethesda, Maryland, USA, on oligodendrogliomas – one of the twelve rare adult brain tumour types on which the NCI-CONNECT programme is focusing.

Primary CNS cancers are tumours that start in the brain and spinal cord. There are over 130 different types. NCI-CONNECT is starting with 12 rare brain and spine tumour types. Tumours include : Atypical teratoid rhabdoid tumour (ATRT), choroid plexus tumours, diffuse midline gliomas, ependymoma, gliomatosis cerebri, gliosarcoma, medulloblastoma, meningioma, oligodendroglioma, pineal region tumours, pleomorphic xanthoastrocytoma (PXA) and anaplastic pleomorphic xanthoastrocytoma (APXA), primitive neuro-ectodermal tumours (PNET).

Since these 12 tumours 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 aims to address these challenges by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.

How patients can participate

NCI-CONNECT has made progress towards its aim, but it also needs patient participation to make a greater impact. It is encouraging patients with rare brain or spine tumours to participate in its current clinical studies or visit NIH in Bethesda, Maryland, United States, for a second opinion or consultation free-of-charge. Providers also can refer patients. NCI-CONNECT partners closely and collaboratively with referring providers on the care and treatment of their patients.

Representatives from patient advocacy organisations partnering with NCI-CONNECT gather for the initiative’s annual partners meeting. Pictured left to right: Alan Dabbiere (Loglio); David Mitchell (EndBrainCancer Initiative - EBCI); Brock Greene (Oligo Nation); Lisa Simms Booth (Biden Cancer Initiative); Dr. Terri Armstrong (NCI-CONNECT); Dr. Mark Gilbert (NCI-CONNECT); Kathy Oliver (International Brain Tumour Alliance - IBTA); Ralph DeVitto (American Brain Tumor Association - ABTA); Dr. Nicole Willmarth (American Brain Tumor Association - ABTA); Brittany Cordeiro (NCI-CONNECT); and Kim Wallgren (Collaborative Ependymoma Research Network - CERN)

The clinical studies for patient participation include an online Outcomes and Risk Project that patients can participate in from their home. It is an online survey that also includes collection of a saliva sample for genetic testing. Its Natural History Study aims to better understand rare brain and spine tumours and uncover areas for further research. It also aims to connect patients with doctors who can help them manage their illness and provide new treatment options. To participate, patients visit NIH for a consultation and provide tumour tissue for pathology review.

In January 2019, NCI-CONNECT launched disease-specific specialty clinics at NIH. The NCI-CONNECT Clinics occur weekly and bring together adult patients with rare brain or spine tumours and their caregivers to receive special services. These services include genetic counseling and testing, molecular tumour testing, outcome reporting, health and wellness support, and clinical trial information.

Join its network or be a partner

NCI-CONNECT has established a national network of centers willing and eager to participate in studying rare brain and spine tumours. The network will participate in NCI-CONNECT clinical studies and develop multicenter clinical trials. NCI-CONNECT has also partnered with non-profit organizations, including IBTA, who share a common concern for improving the outcomes of patients with rare adult brain and spine tumours through awareness and education. These networks and partnerships are the key to helping NCI-CONNECT enroll patients on clinical studies and trials.

NCI-CONNECT has also launched a series of disease-specific workshops. Participants are experts across research and clinical specialties. It has hosted workshops on histone-mutated gliomas, oligodendrogliomas, ependymomas and next, medulloblastoma.

NCI-CONNECT is establishing a model of building partnerships and networks that could have a huge impact. It encourages participation from patients, providers, and advocates to continue to advance the understanding of rare brain and spine tumours and improve care.

Learn more at or contact For regular updates:

  • Follow @NIHBrainTumor #NCICONNECT on Twitter
  • Subscribe to NCI-CONNECTions for news and information

NCI-CONNECT Infographic

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