Patient-Advocacy-Provider Partnerships and Networks Support Rare Cancer Research
My area of research focus is adults with primary central nervous system (CNS) tumors, which represent less than 2% of all diagnosed cancers. Because of the cancers’ rarity, access to diagnosed patients for research initiatives is limited. My team’s program, NCI-CONNECT (https://www.cancer.gov/rare-brain-spine-tumor/), a part of the Rare Tumor Patient Engagement Network supported by the Cancer Moonshot (https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative), is advancing our understanding of adults with rare CNS cancers by establishing (https://www.cancer.gov/rare-brain-spine-tumor/about) patient-advocacy-provider partnerships and networks to improve care and treatment approaches.
Engagement and partnership between patient-advocacy-provider groups like NCI-CONNECT are critical for reaching patients with these rare diseases and facilitating care outside of traditional healthcare systems. Our program’s goals (https://www.cancer.gov/rare-brain-spine-tumor/about) are to:
- Develop an infrastructure across a network of national and international sites to study select adult rare CNS tumors.
- Collect, analyze, and share data to promote discovery and improve understanding of select rare CNS tumors.
- Use the network to facilitate the translation of discoveries into new therapies and methods to improve adult patient outcomes.
NCI-CONNECT works with a network of researchers and institutions called the Brain Tumor Trials Collaborative, which includes 32 institutions across the United States, to investigate new treatments. This allows a broad geographic range of patients to participate in cutting-edge clinical trials and helps us determine the benefits of various therapies.
Our program partners with nine national and international patient advocacy groups and organizations to share educational content and raise awareness of rare CNS tumors. We also collaborate (https://reporter.nih.gov/search/6NXwTkNQ_UC9I5AzkQ2HKQ/project-details/10262505) with the Society for Neuro-Oncology (https://www.soc-neuro-onc.org/) (SNO), the largest international professional organization in neuro-oncology, to distribute educational materials, host events, and promote scientific findings to the neuro-oncology community.
NCI-CONNECT has held five scientific or clinical outcomes workshops focused on specific rare CNS cancer types and an international advocacy summit at the National Institutes of Health. The meetings brought together neuro-oncology experts and patient advocates to collaborate to improve therapies and develop new clinical trials. During the COVID-19 coronavirus pandemic, we hosted a patient educational webinar with an advocacy partner on telehealth visits, an educational webinar with SNO for medical providers focused on patient-centered communications, and a scientific webinar with SNO on transdisciplinary global research in rare CNS tumors to establish a framework to improve outcomes across CNS diseases.
Research is critical to grow our understanding of the experience of patients with rare cancers and tumors. Nurses and researchers must continue to investigate rare diseases to provide patient support and information. Interprofessional research allows us to explore the biologic underpinnings, and from there, we can design relevant interventions with meaningful impact.