The results of the study will be discussed in a number of workshops throughout Europe and will assist in producing guidelines and recommendations of the part patient organisations can and are willing to play in clinical research. The recommendations will be presented to European and national policy makers, scientists and the biopharmaceutical industry.  In line with the goals of the study, a European network will be founded to support the involvement of patient organisations in clinical research.

The Project leaders believe that involving patient organisations in an early stadium of clinical research, as equal partners, contributes to research that is better adjusted to the actual problems of patients. Furthermore, the partnership contributes to speeding up research, improving its quality, giving more insight into the possible benefits and disadvantages and finally to better healthcare.

Patient Partner is a three year project funded by the European Commission. The Genetic Dutch Alliance has joined forces with three European partners, the Genetic Interest Group (GIG), the European Genetic Alliance Network and the European Forum for Good Clinical Practice. The work will focus on major diseases as well as rare illnesses.