The EULID project contributes to a European consensus on legal and ethical issues that could lead to best practices. It has created a growing knowledge community where international experts can work on future perspectives, through a Living Donor Observatory (LIDOBS).

The Living Donor Observatory is a living donor knowledge community with the worry and interest to join efforts to improve the quality of the procedure as well as to establish international consensus in order to protect living donors’ health and safety through the development of international registries and the follow-up of living donation impact on donors’ life.

The EULID consensus on common registries and the recommendation for their application are important improvements to be implemented.  In its Action plan on Organ Donation and Transplantation 2009-2015, the European Commission has stated the need to promote the development of registration practices regarding LD in order to facilitate monitoring and follow-up and guarantee their safety.  Taking this into account and considering that to our knowledge there is not a stable research group without geographical limitations focused on LD, the LIDOBS proposal offers the opportunity to make a significant step towards the goal of improving the quality of the procedure and LD health and safety. In order to do so, we can exploit the online database for LD registry. This is now working at European level, but in the next years we intend to register data from other countries, which have already expressed their interest in participating. Our long term objective is to have a registry that would be representative of the global state of the art. Currently with more than 800 entries.

Among tools developed, the EULID partners validated a living donor satisfaction Survey that examines three spheres: Information, perception and acceptance of the donation process; quality of life; and psychological well-being. Living donor’s opinion through a satisfaction survey can be one of the tools to monitor the quality and safety of the living donation programs and the key to detect all the potential negative consequences of becoming an organ donor. LIDOBS researchers give continuity to this job so that at the present moment the Satisfaction Survey is available on-line and more than 200 surveys have been collected from 11 countries have been interviewed and the data can also be found in the online database. The survey has been translated into 12 European languages.

Promoting LD follow-up and international registration practices through research and data analysis, as well as creating consensus among professionals, will benefit transplant professionals as well as LD programs. LD themselves will be the ultimate beneficiaries as they will improve their safety and health. Registry and follow-up are tools that allow benchmark for quality control and implementation of improvement measures. Registry, when regulated, is one of the scarce tools that states have in order to detect unethical or forbidden practices, taking into account that, when obligated, the non-registration is by itself an infraction. It is necessary the development of registration models by the scientists themselves so that states have a reference to implement for the benefit of LD health and safety.