(from the IPPOSI May 2011 newsletter - haven't read it so can't comment on it but thought I'd post it somewhere in case it might be of use to somebody)
FINAL PATIENTPARTNER REPORT PUBLISHED
The PatientPartner Project drew to a close in the summer of 2011. The
project had set out to promote the role of patient organisations in the
clinical trials context. PatientPartner was based on the belief that
involving patient organisations as equal partners at all stages of clinical
trials contributes to research that is better adjusted to the real needs of
patients. PatientPartner was a three year project within the 7th Framework
programme funded by the European Commission. The study looked closely at the
part that patient organisations play and are willing to play in clinical
trials and also focussed its attention on clinical trials with children, the
use of biobanks and ethical issues.
The final report of the PatientPartner taskforce, is available here:
http://www.patientpartner-europe.eu/en/project-outcomes
Ref: EFGCP http://www.efgcp.eu/ (The European Forum for Good Clinical
Practice (EFGCP) is a
non-profit organisation established by and for individuals with a
professional involvement in the conduct of biomedical research. Its purpose
is to promote good clinical practice and encourage the practice of common,
high-quality standards in all stages of biomedical research throughout
Europe).