Englander Institute for Precision Medicine

The Landscape of US and Global Rare Tumor Research Programs: A Systematic Review.

TitleThe Landscape of US and Global Rare Tumor Research Programs: A Systematic Review.
Publication TypeJournal Article
Year of Publication2024
AuthorsVivelo C, Reilly KM, Widemann BC, Wedekind MFrances, Painter C, O'Neill AF, Mueller S, Elemento O, Gross AM, Sandler AB
Date Published2024 Feb 02
KeywordsHumans, Neoplasms, Tissue Banks

Rare cancers and other rare nonmalignant tumors comprise 25% of all cancer diagnoses and account for 25% of all cancer deaths. They are difficult to study due to many factors, including infrequent occurrence, lack of a universal infrastructure for data and/or tissue collection, and a paucity of disease models to test potential treatments. For each individual rare cancer, the limited number of diagnosed cases makes it difficult to recruit sufficient patients for clinical studies, and rare cancer research studies are often siloed. As a result, progress has been slow for many of these cancers. While rare cancer research efforts have increased over time, the breadth of the research landscape is not known. A recent literature search revealed a sharp increase in rare tumor, and rare cancer publications began in the early 2000s. To identify rare cancer research efforts being conducted in the US and globally, we conducted an online search of rare tumor/rare cancer research programs and identified 76 programs. To gain a deeper understanding of these programs, we composed and conducted a survey to ask programs for details about their research efforts. Of the 42 programs contacted to complete the survey, 23 programs responded. Survey results show most programs are collecting clinical data, molecular data, and biospecimens, and many are conducting molecular analyses. This landscape analysis demonstrates that multiple rare cancer research efforts are ongoing, and the rare cancer community may benefit from collaboration among stakeholders to accelerate research and improve patient outcomes.

Alternate JournalOncologist
PubMed ID37878787
PubMed Central IDPMC10836296
Grant List75N95021D00012 / DA / NIDA NIH HHS / United States
75N95021D00012 / CA / NCI NIH HHS / United States
/ RC / CCR NIH HHS / United States

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