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NCI intramural program approach to rare tumors: Natural history study of rare solid tumors in children and adults: A longitudinal, comprehensive data and biospecimen collection protocol

  1. Author:
    Wedekind, Mary Frances
    Reilly, Karlyne M
    Rivero, Jaydira Del
    Lockridge,Robin
    Allen, Taryn
    Raygada, Margarita
    Bernstein, Donna
    Thomas, Barbara J
    Vivelo, Christina
    Levine, Jason
    Shonkoev, Nurlan
    Aldape, Kenneth
    Glod, John
    Sandler, Abby B
    Widemann, Brigitte C

  2. Author Address

    Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA., Developmental Therapeutics Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA., Clinical Research Directorate (CRD), Frederick National Laboratory for Cancer Research, Frederick, Maryland, USA., Office of Information Technology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA., Laboratory of Pathology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.,
    1. Year: 2023
    2. Date: Jun 21
    3. Epub Date: 2023 06 21
  2. Journal: Pediatric Blood & Cancer
    1. Pages: e30495
  4. Type of Article: Article
  5. Article Number: e30495
  1. Abstract:

    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. 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.

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External Sources

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  2. DOI: 10.1002/pbc.30495
  3. PMID: 37345354

Library Notes

  1. Fiscal Year: FY2022-2023
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