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Title: Advocacy groups as research organisations: the PXE International example
Author: Terry, S., Terry, P., Rauen K., Uitto J. & Bercovitch, L.
Date Published: 2007
Reference: Nature Reviews Genetics, 8(2), 157-164
Are service users or carers authors: Yes

Abstract:

Aim: This paper describes the experience of a number of advocacy organisations in the USA which have become actively involved in research. The paper concentrates on one advocacy organisation, called PXE International (PXE is a rare genetic condition), but also describes the experiences of a number of other organisations which support people with a rare condition.

Method: PXE International has initiated, funded and carried out research on PXE. It has also brought together researchers and people affected by PXE, and developed new clinical trials.
 
Findings/recommendations: The authors state that the involvement of PXE (and other similar advocacy organisations) in research has led to:
  • an increase in the amount of research undertaken in a particular area
  • an increase in funding available for research
  • an increase in the number of biological samples donated
  • recruitment being quicker and easier
  • the establishment of a blood and tissue bank
  • the discovery of genes
  • the development of new diagnostic tests.

PXE has shared its experience with other organisations.  This has led to the sharing of protocols, procedures and other types of information and the establishment of a Genetic Alliance Biobank. 

External link: The following links will take you to information on this entry on an external website. INVOLVE is not responsible for the content or the reliability of the external websites. Link to abstract

Related entry: none currently available

Categories: health
Identifying topics, prioritising and commissioning
Designing research
Managing research
Undertaking research
impact on funding/commissioning
impact on research
impact on implementation and change
impact of public involvement
journal article
Recruitment

Date Entered: 2007/03/30

Date Edited: 2012/11/21

Additional Info:
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