Advocacy groups as research organizations: The PXE International example

Sharon F. Terry, Patrick F. Terry, Katherine A Rauen, Jouni Uitto, Lionel G. Bercovitch

Research output: Contribution to journalReview articlepeer-review

134 Scopus citations

Abstract

Advocacy organizations for genetic diseases are increasingly becoming involved in biomedical research, particularly translational research, in order to meet the needs of the individuals that they serve. PXE International, an advocacy organization for the disease pseudoxanthoma elasticum, provides an example of how research can be accelerated by these groups. It has adopted methods that were pioneered by other advocacy organizations, and has integrated these along with new approaches into franchizable elements. The model has been followed for other conditions and has led to the establishment of a common infrastructure to enable advocacy groups to initiate, conduct and accelerate research.

Original languageEnglish (US)
Pages (from-to)157-164
Number of pages8
JournalNature Reviews Genetics
Volume8
Issue number2
DOIs
StatePublished - Feb 2007
Externally publishedYes

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Genetics
  • Genetics(clinical)

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