Methodology
12000 National patient organisations were contacted by email inviting them to take part in the survey between October and December 2008, on the involvement of patient organisations in clinical trials.
The survey consisted of 24 questions, asking patient organisations about their involvement in clinical trials on the following levels:
- as a research subject
- as an information provider
- as an advisor
- as a reviewer
- as a co-researcher
- as a driving force
The survey also asked patient organisations to state their experience in being involved in clinical trials with children, Biobanking and medical databanks.
The survey and invitation were made available in five different European languages: English, German, Dutch, Spanish and French and could be filled in online through a subsequent weblink that was made available on the website www.patientpartner-europe.eu.
Respondents were given the option of taking part in the survey while remaining anonymous, approximately 2% of all respondents made use of this opportunity.