Academia, advocacy, and industry: A collaborative method for clinical research advancement

Rena J. Vanzo, Amanda Lortz, Amy R.U.L. Calhoun, John C. Carey

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Professionals who work in academia, advocacy, and industry often carry out mutually exclusive activities related to research and clinical care. However, there are several examples of collaboration among such professionals that ultimately allows for improved scientific and clinical understanding. This commentary recounts our particular experience (a collaboration between geneticists at the Universities of Minnesota and Utah, the 4p- Support Group, and Lineagen, Inc) and reviews other similar projects. We formally propose this collaborative method as a conduit for future clinical research programs. Specifically, we encourage academicians, directors of family/advocacy/support groups, and members of industry to establish partnerships and document their experiences. The medical community as a whole will benefit from such partnerships and, specifically, families will teach us lessons that could never be learned in a laboratory or textbook.

Original languageEnglish (US)
Pages (from-to)1619-1621
Number of pages3
JournalAmerican Journal of Medical Genetics, Part A
Issue number7
StatePublished - Jul 2014


  • 4p- Support Group
  • Clinical research
  • Family Support Group
  • National Conference
  • National Meeting
  • Wolf-Hirschhorn syndrome (WHS)


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