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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, a part of the Rare Tumor Patient Engagement Network supported by the Cancer Moonshot, is advancing our understanding of adults with rare CNS cancers by establishing patient-advocacy-provider partnerships and networks to improve care and treatment approaches.

The cancer survivorship program team at the University of Pennsylvania Abramson Cancer Center is conducting numerous research projects such as cancer treatment’s late effects, survivors’ quality of life and health behaviors, telemedicine for survivorship visits, and even an artificial intelligence–powered, mobile phone–based program to support patient adherence to guidance from survivorship visits.

Mucositis is a common side effect of many cancer treatments, with incidence rates of 40% in patients receiving chemotherapy, 80% in patients receiving hematopoietic stem cell transplantations, and up to 100% in patients receiving radiation therapy for head and neck cancer. The literature reports mucositis less frequently with targeted agents and immunotherapies; however, it should be considered in an advance practice provider’s approach to overall immune-related adverse event prevention, assessment, and management.