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 | |
| State | Published - Feb 2007 |
| Externally published | Yes |
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ASJC Scopus subject areas
- Agricultural and Biological Sciences(all)
- Genetics
- Genetics(clinical)
Cite this
Advocacy groups as research organizations : The PXE International example. / Terry, Sharon F.; Terry, Patrick F.; Rauen, Katherine A; Uitto, Jouni; Bercovitch, Lionel G.
In: Nature Reviews Genetics, Vol. 8, No. 2, 02.2007, p. 157-164.Research output: Contribution to journal › Review article
}
TY - JOUR
T1 - Advocacy groups as research organizations
T2 - The PXE International example
AU - Terry, Sharon F.
AU - Terry, Patrick F.
AU - Rauen, Katherine A
AU - Uitto, Jouni
AU - Bercovitch, Lionel G.
PY - 2007/2
Y1 - 2007/2
N2 - 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.
AB - 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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UR - http://www.scopus.com/inward/citedby.url?scp=33846296952&partnerID=8YFLogxK
U2 - 10.1038/nrg1991
DO - 10.1038/nrg1991
M3 - Review article
C2 - 17230202
AN - SCOPUS:33846296952
VL - 8
SP - 157
EP - 164
JO - Nature Reviews Genetics
JF - Nature Reviews Genetics
SN - 1471-0056
IS - 2
ER -