Ariadne Stamatopoulou

Project Officer Patient Partner

Main areas of work are:

The Patient Partner Project is an EU funded project that will address the main barriers in communication between patients with genetic disorders and organisations in relation to clinical trials. The project will be focusing on children patients more, as there are more issues that need tending to in that area, as it has come to notice that most medication that is being distributed to children has been tested on adults only.

There are four beneficiary charities that are working in partnership for the Patient Partner Project.

Two of these charities are National Patient Alliances:

Genetic Interest Group (GIG): In the United Kingdom (www.gig.org.uk)
Dutch Genetic Alliances (VSOP): In the Netherlands (www.vsop.nl)

0ne charity is a European Patient Alliance:

European Genetic Alliances� Network (EGAN): In Belgium (www.egan.eu)

And one is a European multi-stakeholder organisation:

European Forum for Good Clinical Practice (EFGCP): In Belgium (www.efgcp.be)

As a partner, GIG will attempt to accomplish these four steps:

• Firstly, a Patient Guide on Partnering in Clinical Trials will be developed. This guide will consist of information that will be able to guide patient organisations in terms of, understanding the patients� perspective, how they are feeling, and to advice on how to deal with these issues.
• Secondly, an Investigator Guide on Patients Partnering in Clinical Trials will be developed. This document will be directed toward organisers and sponsors of clinical trials. It will suggest how to recruit more patients for clinical trials. It will also try and explain why the relationship between the patients and the organisers/sponsors would be better if the patients were perceived more as partners.
• A List of Recommendations for the European and national policy makers and regulators will be produced with the key points of the findings from the research and the workshops.
• Lastly, a Thematic Website will be set up, analysing the themes of the project, with a collection of all the beneficiaries� work in such a way that it will be available to everyone.
• Patient Partner website
  

Email: ariadnegig.org.uk