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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.
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.
Affiliation
  • Wedekind MF; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Reilly KM; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Rivero JD; Developmental Therapeutics Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Lockridge R; Clinical Research Directorate (CRD), Frederick National Laboratory for Cancer Research, Frederick, Maryland, USA.
  • Allen T; Clinical Research Directorate (CRD), Frederick National Laboratory for Cancer Research, Frederick, Maryland, USA.
  • Raygada M; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Bernstein D; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Thomas BJ; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Vivelo C; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Levine J; Office of Information Technology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Shonkoev N; Office of Information Technology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Aldape K; Laboratory of Pathology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Glod J; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Sandler AB; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
  • Widemann BC; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Pediatr Blood Cancer ; : e30495, 2023 Jun 21.
Article in En | MEDLINE | ID: mdl-37345354
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.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Type of study: Guideline Language: En Journal: Pediatr Blood Cancer Journal subject: HEMATOLOGIA / NEOPLASIAS / PEDIATRIA Year: 2023 Document type: Article Affiliation country: United States
Fulltext
Add to My VHL
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PubMed Links
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Full text: 1 Collection: 01-internacional Database: MEDLINE Type of study: Guideline Language: En Journal: Pediatr Blood Cancer Journal subject: HEMATOLOGIA / NEOPLASIAS / PEDIATRIA Year: 2023 Document type: Article Affiliation country: United States