Abstract:
Aim: To work closely with the National Association for the Relief of Paget's Disease (NARPD) in the PRISM trial (a randomised trial of intensive versus symptomatic management).
Methods: The PRISM trial management group worked in partnership with the patient organisation NARPD in designing, conducting and delivering the trial. The NAPRD were involved in peer-review, the trial steering committee, giving advice to participants and promoting the trial to people with Paget's disease.
Findings/recommendations: There were many advantages to working in partnership with NARPD. Most importantly all the participants gained a sense of ownership of the trial. This led to very high response rates to questionnaires which improved the quality of the trial data. The partnership also helped to improve recruitment and the quality of patient information sheets. The authors recommend this approach is used in other trials as a way of improving the information for participants and recruitment. However, there are resource implications for both parties.
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 PubMed abstract
Related entry: none currently available
Categories: health
Identifying topics, prioritising and commissioning
Designing research
Undertaking research
Writing up and disseminating
impact on research
impact on research ethics
impact on researchers
impact of public involvement
journal article
Recruitment
Date Entered: 2007/02/20
Date Edited: 2012/11/20
Additional Info:
