EFRETOS Project – making transplants safer and more effective
Whilst organ donation saves many lives and continues to do so, it is important to increase the number of organ donors, and at the same time to make sure that donated organs are of the highest quality and that transplants are done under strict safety standards.
The EFRETOS project, funded by the EU Health Programme, is a step in this direction aiming to make the use of donated organs safer and more effective in the EU through the creation of a pan-European registry on post-transplant outcome data.
Organs available for transplant are still limited
In the EU alone, 61 000 people are waiting for organ donations. Each day, on average, 12 people die while waiting for a transplant.
The organs that are available need to be used to maximise health – meaning the recipient will go on and lead a full and active life after the transplant. However, at present there is a general lack of data on availability of organs, how they are used and what the results of transplants are. Even if such information exists, it is scattered across EU countries. Only very few EU countries (United Kingdom, France, Netherlands) actually have registries of transplantations and outcomes.
A blue print for national registries
The EFRETOS project started with an inventory – a list of data items to be collected and how they are to be clearly defined has been agreed upon – in other words, a ‘data dictionary’, which EU countries could use as a blue print for their own registries.
The need to document adverse reaction and response has also been agreed upon. Now the legal and technical issues covering the privacy and storing of the data will be addressed and, finally, the quality assurance of these data.
A pan-European registry
With all these main elements in place the overall objective of creation of the pan-European registry is beginning to take shape. The next step will be national or supranational registries on organ transplantation in all EU countries. Eventually all patients in the EU with transplanted organs will be monitored.
The transparencies arising from a proper registry will inevitably lead to more confidence of people in transplantation of organs. This has a two fold effect: transplants become safer and more effective and the public's willingness to donate organs increases, knowing that they will be used effectively for patients in need.