The NCI-CONNECT Rare Brain and Spine Tumor Network hosts meetings to bring together worldwide leaders in neuro-oncology clinical care, basic science, and clinical research with advocacy partners. The meetings aim to advance knowledge and collaborations to discover better treatments for people with rare central nervous system (CNS) cancers.
2018 NCI-CONNECT and BTTC Meetings
June 11-12, 2018
The inaugural NCI-CONNECT Meeting was held in conjunction with the BTTC Annual Meeting. The goal of the meetings was to bring together leaders in a collegial and collaborative environment to discuss current and future clinical trials for patients with malignant brain tumors, with a particular focus on rare CNS tumors. Attendees shared new clinical trial concepts that had both high levels of scientific merit and also incorporated measures of patient quality of life and outcomes.
2019 NCI-CONNECT and BTTC Meetings
April 29-30, 2019
The NCI-CONNECT and Brain Tumor Trials Collaborative (BTTC) Annual Meetings brought over 100 attendees across neuro-oncology specialties together to discuss CNS tumor clinical studies. Presentations and discussions included current studies and new clinical trial concepts that, in addition to measuring efficacy, incorporate patient quality of life and outcomes measures. The overall aim was to ensure current and future studies will help effectively advance treatments for patients with gliomas and rare CNS cancers.
Fourth Biennial World Summit of Brain Tumour Patient Advocates
October 9-12, 2019
The International Brain Tumour Alliance (IBTA) and NCI-CONNECT co-hosted the Fourth Biennial World Summit of Brain Tumour Patient AdvocatesExit Disclaimer. The three-day summit included presentations, work groups and panel discussions focused on understanding current treatments and care, the important role of patient advocates in the brain tumor community, and what matters most to brain tumor patients and caregivers.
NCI-CONNECT hosts and participates in tumor-specific scientific workshops in which experts across institutions studying rare brain and spine cancers and advocates can share knowledge and collaborate. The goal of these scientific workshops is to identify areas of research, develop plans and designs for clinical trials, and facilitate collaboration, and publish a proceedings paper to inform health care providers and the community.
Histone Midline Glioma Workshop
September 27, 2018
The NCI-CONNECT Histone Mutated Midline Glioma Workshop was co-led by Yamini Dalal, M.D., of NCI’s Center for Cancer Research (CCR), Laboratory of Receptor Biology and Gene Expression, at NIH, and Brett Theeler, M.D., of Walter Reed National Military Medical Center and NCI’s CCR, Neuro-Oncology Branch, at NIH. Participants discussed the definition of the disease in adults, current clinical care and treatments, biological targets and clinical trial designs for histone midline gliomas. Participants recognized that accurately diagnosing histone midline gliomas is critical for treatment and research. The group concluded that all tumors should be sampled, processed, analyzed, and stored as standard of care to better understand this rare cancer.
November 19, 2018
The NCI-CONNECT Oligodendroglioma Workshop was co-led by Marta Penas-Prado, M.D. and Jing Wu, M.D., Ph.D., of NCI’s CCR, Neuro-Oncology Branch, at NIH, and Daniel Cahill, M.D., Ph.D., of Massachusetts General Hospital. Participants discussed the molecular pathology of oligodendrogliomas, clinical trial efficacy endpoints and preclinic models, and collaborative efforts in data sharing. Participants recognized the need to combine data, resources, and samples to develop better treatments for oligodendrogliomas.
February 20-22, 2019
The Fourth Biennial Ependymoma Consensus was led by Kenneth Aldape, M.D., chief of NCI’s CCR, Laboratory of Pathology. Participants discussed the latest in grading and diagnosing ependymoma, molecular and genetic testing, and clinical care and treatments for ependymoma. Participants discussed the increasing complexity of diagnosing ependymoma, underscoring the need to work together to further define genetic differences in ependymoma tumors and how they are treated.
November 25, 2019
The NCI-CONNECT Adult Medulloblastoma Workshop was led by Dr. Marta Penas-Prado, at NIH. Participants convened to review advances in research, share scientific insights, and discuss clinical challenges in adult medulloblastoma. Participants identified opportunities for collaboration; discussed plans to create a working group of clinicians, researchers, and patient advocates; and developed specific action items to expedite progress in adult medulloblastoma.
Collaborative Educational Events
Navigating Brain and Spine Tumor Care through Telehealth
June 19, 2020
The Navigating Brain and Spine Tumor Care through Telehealth virtual educational webinar was a collaborative event between NCI’s Neuro-Oncology Branch and Wilmot Cancer Institute, University of Rochester. The brain and spine tumor community heard neuro-oncology experts share what telehealth is, the benefits and limitations, how to prepare and what to expect during and after a visit.
Patient-Centered Communications via Telehealth in Neuro-Oncology
August 27, 2020
The Patient-Centered Communications via Telehealth in Neuro-Oncology virtual meeting was a collaborative event between NCI’s Neuro-Oncology Branch and the Society for Neuro-Oncology (SNO). Neuro-oncology researchers and health care providers learned techniques to build connections with patients and their caregivers during telehealth visits and ways to use patient-centered communication strategies to improve patient outcomes.
Transdisciplinary Global Research in Rare CNS Tumors: A Framework to Impact Outcomes Across CNS Disease
September 25, 2020
The Transdisciplinary Global Research in Rare CNS Tumors virtual meeting was led by NCI-CONNECT in partnership with SNO. Neuro-oncology researchers and health care providers recognize that working together globally across all brain and spine cancers is the most effective path forward to improve treatments and outcomes. Speakers from four countries presented on important topics in the field – preclinical models, tumor classification and molecular analysis, clinical trial development and outcomes, and global collaborations. Within these topics, experts discussed advances, challenges and possible solutions.
Survivorship Care in Neuro-Oncology Symposium
June 21 - 22, 2021
The Survivorship Care in Neuro-Oncology Symposium was held virtually and led by NCI-CONNECT. The Symposium provided a forum for neuro-oncology health care providers, researchers, patient advocates, patients, and care partners to learn and discuss the challenges experienced by persons living with central nervous system tumors. The symposium goals included developing survivorship care guidelines for the medical community and a research agenda focused on the gaps in CNS tumor survivorship care.