Rare tumors across the world are lacking adequate knowledge, resources, and community. Through partnership with patients, advocacy organizations, researchers, and clinicians, we have developed a comprehensive, longitudinal, prospective, and retrospective natural history protocol to collect, analyze, and share data on patients with rare tumors. A strong collaborative effort is vital to ensure success of enrollment, patient engagement, data collection, and analysis to ultimately develop clinical trials to improve outcomes for patients with rare cancers.
Keywords: adult rare tumor; natural history; pediatric rare tumor; rare tumor; young adult rare tumor.
Published 2023. This article is a U.S. Government work and is in the public domain in the USA. Pediatric Blood & Cancer published by Wiley Periodicals LLC.