www.eulivingdonor.eu
EULID PROJECT European Living Donation and Public Health
Martí Manyalich, Assumpta Ricart, Chloë Ballesté, David Paredes, Christian Hiesse, Leonídio Dias, Ingela Fehrman-Ekholm, Andy Maxwell, Rosana Turcu, Pål-Dag Line, Danica Avsec, Dorota Lewandowska, Niclas Kvarnström, Carlo De Cillia, Alessandro
Nanni Costa, Janusz Walaszezski, Christophe Legendre, Garabet Khasho, George Kyriakides and Victor Gheorghe Zota.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
To analyze the current European situation regarding legal, ethical,
protection and registration practices related to living organ
donation, in order to set standards and recommendations that
guarantee the living donor health and safety.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
MAIN OBJECTIVE
www.eulivingdonor.eu
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
Contribute to consensus and establish recommendations to
ensure the health and safety of the living donor among European
countries
Legal aspects
Consensus Tools
Satisfaction survey
On-line data base
Informative leaflet
Ethical dilemmas
LD protection
Registry model
RESULTS
www.eulivingdonor.eu
RESULTS
LEGISLATION
Prohibition and penalization of organ trafficking, transplant tourism and commercialism, including incentives.
Prohibition of minors and persons unable to give consent.
Authorization of transplant centers and registry of LD under the control of authorities.
Regulation of independent commission (evaluation, information, approval).
Reimbursement of expenses related to donation and provisions to protect donors and their families from discrimination, permanent injury or death.
Consensus/Final recommendations
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSConsensus/Final
recommendations
ETHICAL
The altruism of LD should be object of the most elevated consideration by the community.
The promotion of LD should not impede cadaveric donation and its development to its maximal potential.
Organ trafficking, commercialism or incentives are ethically unacceptable and should be banned.
LD candidates should be protected against any form of physical, psychological, social or economical disadvantage
The autonomy of the LD to decide to be a donor does not surpass appropriate medical decision-making based on evaluation risk.
The reimbursement model should be implemented by health authorities to protect donors.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSConsensus/Final
recommendations
PROTECTION
Sick leave with 100% payment and socio-medical and protective support if sick leave is prolonged.
There should be no cost to the donor for the evaluation of medical and psychosocial suitability nor for the donor surgical procedure.
Financial coverage in case of unforeseen events related with the donation process.
Medical follow-up obligated and psychosocial support if needed.
Living donation should not be a limitation for getting a life insurance, mortgage as well as any other social assistance or benefit.
Homogeneous protection systems within the European Union with a defined minimum standard
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTS
INFORMATIVE LEAFLET
Translated in 12 languages, 2 different parts with information for each organ about: options to become a donor, investigations and selection, surgical approach, normal course and adverse events and long-term follow-up.
Translated in 12 languages, 2 different parts with information for each organ about: options to become a donor, investigations and selection, surgical approach, normal course and adverse events and long-term follow-up.
TOOLS DEVELOPED
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSTOOLS DEVELOPED
LIVING DONOR SATISFACTION SURVEY
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSSURVEY PERFORMED
240 surveys have been performed among living donors European citizens
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSInformation, perception and acceptance of the
donation process
GENERAL EVALUATION
Information, perception and acceptance of the
donation process
EXAMPLES
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSQuality of life
GENERAL EVALUATION
Quality of life
EXAMPLES
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTSPsychological well-being
GENERAL EVALUATION
Psychological well-being
EXAMPLES
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
RESULTS
EXCELLENCE
RECOMMENDED
OBLIGATORY
Donor and recipient Nationality, Residence, Donor recipient Relationship, Type of living organ allocation, Type of organ, status
Clinical parameters (weight, length, clinical kidney and liver laboratory parameters, systolic and diastolic blood pressure, complications such as surgical re-intervention, pain, wound complications)
Satisfaction survey, Quality control, Quality of life, Psychological complications
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
EXTERNAL EVALUATION
“The main objective if this project analyzing the current European situation regarding legal, ethical, protection and registration practices related to living organ donation, giving opportunity to set up high quality standards for its practice, is of utmost importance not only to the European continent but also
to all the word over” JO. Medina-Pestana
ASSESSORS:• Francis L. Delmonico:
Director of Medical Affairs for The Transplantation SocietyAdvisor to the Word Health OrganizationProfessor of Surgery at Harvard Medical SchoolMedical Director of the New England Organ Bank in Newton, Massachusetts
• José O. Medina-Pestana:Full Professor of Medicine. Federal University of São Paulo BrazilHead of Renal Transplantation Unit. Hospital do Rim e Hipertensão. São Paulo.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
DISEMINATION • V International Meeting on Living Donor Liver and Kidney Transplantation held in
Barcelona on November 2007.
• XXIII Reunión Nacional de Coordinadores de Trasplantes. Zaragoza, Spain, June 2008.
• 5th ETCO Annual Meeting, Riga, Latvia, October 2008.
• 10th Congress of the Catalan Transplant Society. Barcelona, Spain, February 2009.
• XXIV Reunión Nacional de Coordinadores de Trasplantes. Barcelona, Spain, May 2009.
• 4th ESOT Congress. Paris, France, October 2009.
• 10th ISODP and 16th ETCO Organ Donation Congress. Berlin, Germany, October 2009.
• 2nd ELPAT Congress. Rotterdam, Netherlands, April 2010.
• 1er Congreso Sociedad Española de Trasplante. Sevilla, Spain, June 2010.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
DISEMINATION • XXIII International Congress of The Transplantation Society. Vancouver, Canada,
August 2010.
• Living kidney Donor Follow-up: State of the art and future directions. Washington, EEUU, September 2010.
• European Organ Donation Congress, 22nd ETCO, Cardiff, Wales, UK, September 2010.
• 12TH Congress of the Middle East Society for Organ Transplantation (MESOT), Tunisia, October 2010.
• 5º Convegno Nazionale dell’OCST. Organizzaziones Centro Sud Trapianti. Sardinia, Italy, October 2010.
• 11º Congrés Societat Catalana de Trasplantament. Barcelona, March 2011.
• 15th Congress of the European Society for Organ Transplantation. Glasgow, Scotland. September 4-7, 2011.
• 12th Congress of the Asian Society of Transplantation. Seoul, Korea. September 25-28, 2011.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
CONCLUSIONS
•The project contributes to a European consensus on legal and ethical issues that could lead to best practices.
•The protection of living donors should be done through laws and regulations as well as giving information and performing a follow-up.
This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008
www.eulivingdonor.eu
E-mail: [email protected]
www.eulivingdonor.eu/lidobs
LIDOBSLiving Donor Observatory