Advocacy groups as research organizations: The PXE International example

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

doi:10.1038/nrg1991

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 journal › Review article › peer-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 language	English (US)
Pages (from-to)	157-164
Number of pages	8
Journal	Nature Reviews Genetics
Volume	8
Issue number	2
DOIs	https://doi.org/10.1038/nrg1991
State	Published - Feb 2007
Externally published	Yes

ASJC Scopus subject areas

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

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10.1038/nrg1991

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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.",

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