Meaningful engagement of the patient in rare cancer research: sarcoma as an exemplar

Curr Probl Cancer. 2021 Aug;45(4):100772. doi: 10.1016/j.currproblcancer.2021.100772. Epub 2021 Jul 1.


Patient advocates who understand scientific methods and proper research processes can bring valuable perspectives to modern research. This is particularly important in rare cancers like sarcoma as each patient becomes a precious source of information to better diagnose, understand the biology and the effect of treatment. Reviewing approaches used by other cancer patient advocates can provide valuable insights to develop effective research advocates in rare cancers such as sarcoma.

Keywords: Engagement; Patient Advocate; Rare Cancer; Research Advocate; Sarcoma.

Publication types

  • Review

MeSH terms

  • Humans
  • National Cancer Institute (U.S.)
  • Organizations, Nonprofit
  • Patient Advocacy*
  • Patient Participation*
  • Research Subjects
  • Sarcoma*
  • United States
  • United States Food and Drug Administration