NCI-CONNECT hosts meetings to bring together advocacy partners with worldwide leaders in neuro-oncology clinical care, basic science, and clinical research. The meetings aim to advance knowledge and collaborations to discover better treatments for people with rare central nervous system (CNS) cancers.
Collaborative Educational Events
NCI Interprofessional Communications Curriculum (ICC) Course
July 17-18, 2023
In collaboration with the NCI Center for Cancer Research (CCR) Office of Patient-Centered Outcomes Research, the Office of Research Nursing, and the CCR Clinical Trials Diversity Equity and Inclusion Committee, NCI-CONNECT sponsored the CCR Interprofessional Communication Curriculum (ICC) Training Course. The course consisted of didactic lectures and hands-on communication sessions to help participants enhance their communication skills in important but challenging patient care areas, such as the physical, psychological, cultural, and spiritual aspects of both pediatric and adult patient care. Twenty-four health care providers working on transdisciplinary teams were selected from across CCR to participate.
Survivorship in Neuro-Oncology Visiting Scholar Lecture
May 5, 2023
The inaugural Visiting Scholar Lecture on Survivorship in Neuro-Oncology was held at NIH with two special guests: Kimberly Wallgren, a caregiver and patient advocate, and Adam Hayden, a survivor and patient advocate. They shared their invaluable perspectives on survivorship and person-centered care in neuro-oncology with clinicians and researchers. The event aimed to foster collaboration and learning in neuro-oncology.
Opportunities to Advance the Science of Survivorship in Neuro-Oncology
May 2, 2023
In collaboration with the NCI Office of Cancer Survivorship, NCI-CONNECT hosted a webinar discussing the importance of improving survivorship care for people living with rare brain and spine tumors; what the CCR Neuro-Oncology Branch Patient Outcomes Research Program has learned through their research; and the existing research gaps. The webinar included cancer survivorship research experts and a patient advocate, and is part of a long-term plan to advance survivorship research in neuro-oncology.
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 people living with CNS 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.
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 the Society for Neuro-Oncology. 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.
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 CCR’s Neuro-Oncology Branch and the Society for Neuro-Oncology. Neuro-oncology researchers and health care providers learned techniques to build connections with patients and their caregivers during telehealth visits. They also learned ways to use patient-centered communication strategies to improve patient outcomes.
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 CCR’s Neuro-Oncology Branch and the University of Rochester Medical Center’s Wilmot Cancer Institute. The brain and spine tumor community heard neuro-oncology experts share what telehealth is, its benefits and limitations, how to prepare for a telehealth visit, and what to expect during and after a visit.
NCI-CONNECT hosts and participates in tumor-specific scientific workshops in which advocates and experts across institutions studying rare brain and spine cancers can share knowledge and collaborate. The goal of these scientific workshops is to identify areas of research, develop plans and designs for clinical trials, facilitate collaboration, and publish proceedings papers to inform health care providers and the community.
November 25, 2019
The NCI-CONNECT Adult Medulloblastoma Workshop at NIH was led by Marta Penas-Prado, M.D., of CCR's Neuro-Oncology Branch. 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.
Fourth Biennial Ependymoma Consensus
February 20-22, 2019
The Fourth Biennial Ependymoma Consensus was led by Kenneth Aldape, M.D., chief of CCR’s Laboratory of Pathology. Participants discussed the latest in grading and diagnosing ependymomas, molecular and genetic testing, clinical care, and treatments. Participants also discussed the increasing complexity of diagnosing ependymomas, underscoring the need to work together to further define genetic differences in ependymoma tumors and how they are treated.
November 19, 2018
The NCI-CONNECT Oligodendroglioma Workshop at NIH was co-led by Marta Penas-Prado, M.D. and Jing Wu, M.D., Ph.D., of CCR’s Neuro-Oncology Branch 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.
Histone Midline Glioma Workshop
September 27, 2018
The NCI-CONNECT Histone Mutated Midline Glioma Workshop was co-led by Yamini Dalal, M.D., of CCR's Laboratory of Receptor Biology and Gene Expression and Brett Theeler, M.D., of Walter Reed National Military Medical Center and CCR’s Neuro-Oncology Branch. Participants discussed the definition of histone mutated midline gliomas in adults, current clinical care and treatments, biological targets, and clinical trial designs for histone mutated midline gliomas. Participants recognized that accurately diagnosing this disease 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.
Annual Meetings and Summits
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 Advocates. The three-day summit included presentations, working 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.
2019 NCI-CONNECT and BTTC Meetings
April 29-30, 2019
The 2019 NCI-CONNECT and Brain Tumor Trials Collaborative (BTTC) Annual Meetings brought together over 100 attendees across neuro-oncology specialties to discuss CNS tumor clinical studies. Presentations and discussions included current studies and new clinical trial concepts that, in addition to measuring efficacy, incorporated 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.
2018 NCI-CONNECT and BTTC Meetings
June 11-12, 2018
The inaugural NCI-CONNECT Meeting was held in conjunction with the Brain Tumor Trials Collaborative (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.