Dr. Derick Mitchell:

To complement that, and to emphasise the point Ms McGrath is making, there is a certain perception that the European Reference Networks are just about service delivery. The vision for the European Reference Networks is also about data collection. It is about harnessing the power of Europe to work for patients in individual countries. In Ireland in particular, part of the development of a new national rare disease plan would be more emphasis and much more supports for the clinical leaders. However, patients are playing leading roles in several of the European Reference Networks, and such a plan should also allow for greater Irish leadership in those reference networks. We believe they will become one of the major solutions for things like pricing, reimbursement and ultimately better assessment processes.

I refer also to the joint clinical assessment initiatives that are going through the European Legislature at the moment. The Commission's proposal for joint clinical assessments is something we have been looking at and of which we are highly supportive. While there are differences in opinion in various member states as to how it affects their assessment processes, joint clinical assessments applicable across jurisdictions certainly make sense from a patient perspective and with regard to duplication. Some 14 patient umbrella groups at European level recently released a statement about the consensus on patient involvement in that proposal. Patient involvement needs to be a greater consideration in the overall co-ordination of efforts in joint clinical assessments.