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.
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| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10733551 | PMC |
| http://dx.doi.org/10.1002/pbc.30495 | DOI Listing |
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