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Opportunities and challenges for the development of "core outcome sets" in neuro-oncology.

  • Millward, Christopher P
  • Armstrong, Terri S
  • Barrington, Heather
  • Brodbelt, Andrew R
  • Bulbeck, Helen
  • Byrne, Anthony
  • Dirven, Linda
  • Gamble, Carrol
  • Grundy, Paul L
  • Islim, Abdurrahman I
  • Javadpour, Mohsen
  • Keshwara, Sumirat M
  • Krishna, Sandhya T
  • Mallucci, Conor L
  • Marson, Anthony G
  • McDermott, Michael W
  • Meling, Torstein R
  • Oliver, Kathy
  • Pizer, Barry
  • Plaha, Puneet
  • And 10 more
Publication Date
Jul 01, 2022
eScholarship - University of California
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Core Outcome Sets (COS) define minimum outcomes to be measured and reported in clinical effectiveness trials for a particular health condition/health area. Despite recognition as critical to clinical research design for other health areas, none have been developed for neuro-oncology. COS development projects should carefully consider: scope (how the COS should be used), stakeholders involved in development (including patients as both research partners and participants), and consensus methodologies used (typically a Delphi survey and consensus meeting), as well as dissemination plans. Developing COS for neuro-oncology is potentially challenging due to extensive tumor subclassification (including molecular stratification), different symptoms related to anatomical tumor location, and variation in treatment options. Development of a COS specific to tumor subtype, in a specific location, for a particular intervention may be too narrow and would be unlikely to be used. Equally, a COS that is applicable across a wider area of neuro-oncology may be too broad and therefore lack specificity. This review describes why and how a COS may be developed, and discusses challenges for their development, specific to neuro-oncology. The COS under development are briefly described, including: adult glioma, incidental/untreated meningioma, meningioma requiring intervention, and adverse events from surgical intervention for pediatric brain tumors.

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