In 2012 IPPOSI launched an information campaign about clinical trials – www.clinicaltrials.ie and supporting leaflets – that aimed to inform patients and the general public about taking part in clinical trials. The original IPPOSI information campaign was based on text provided by an FP7 Project, Patient Partner and EGAN. It was applied in the Irish context with the assistance of ICRIN.
In 2014 the site and the leaflets were updated to include age-specific information for children taking part in clinical trials. This work was done in in partnership with the National Children’s Research Centre (NCRC) in Our Lady’s Hospital for Children, Crumlin. The content was written for children of different ages (Under 8 / 8-12 / 13-18) and their parents. The text for the series of leaflets aimed at children participating in a clinical trial was developed by the National Children’s Research Centre, Paediatric Clinical Research Unit, and was reviewed by the Ethics Committee of Our Lady’s Children’s Hospital, Crumlin; Temple Street Children’s University Hospital Research Unit & Child Health Information Centre and IPPOSI.
The booklets are an excellent and popular resource and IPPOSI regularly receives requests from around Europe to use these materials in other countries. The website was launched on May 12th 2014 by Dr Graham Love of the Health Research Board.
- 77% of people in Ireland agree that clinical research with the aim of developing new ways to treat many diseases is a good idea.
- 65% of Irish people would be willing to share personal medical information for medical research if it is done in a confidential manner.
The report was launched at the National Strategic Forum for Clinical Research in Farmleigh House. You can read the full report here. Presentations from the guest speakers at the National Strategic Forum are available here.
This working group has been established and is working collaboratively on a number of activities under the CRCI and IPPOSI umbrellas, to promote active PPI as part of the infrastructure for clinical research in Ireland. Click here for more information on this working group.