The aim of the Education Committee (EC) is to coordinate ESOT’s efforts to advance multidisciplinary education for transplant professionals at all career levels and to contribute to their professional development.
The Basic Science Committee promotes scientific issues and transplantation research within ESOT. An active basic science community and an efficient translation of innovation into the clinic are crucial for the future of transplantation medicine.
The European Transplant Allied Healthcare Professionals (ETAHP) reaches out to allied healthcare professionals throughout Europe in order to ensure the best care possible for all transplant patients, with the aim to optimize patient outcomes.
The Young Professionals in Transplantation (YPT) is the Network for Junior Transplant professionals of ESOT, representing all young transplant clinicians and scientists who are beginning a career in transplantation and organ donation.
The mission of ECTORS is to provide a forum for discussing and stimulating novel developments in the fields of cellular therapies in organ transplantation, organ regeneration and generation of new organs from stem cells and biomaterials.
ECTTA is the forum for experience exchange on treatment of patients with end-stage heart and lung failure. Our aim is to improve outcomes for the patients.
EDTCO aims to support health care professionals to provide clinically effective programmes on organ and tissue donation, procurement and transplantation.
EKITA is the Organ Expert Section of ESOT on kidney transplantation in Europe, providing a forum for kidney transplantation professionals to exchange scientific information and views aimed at providing the best service to European patients .
The European Liver and Intestine Transplant Association (ELITA), previously known as the European Liver Transplant Association (ELTA), is a section of ESOT. Its membership represents the expertise on liver and intestinal transplantation in Europe.
ELPAT is a European platform that brings continuity and progress in European research and dialogue on "Ethical, Legal and Psychosocial Aspects of organ Transplantation". ELPAT currently consists of over 160 experts from more than 25 European countries.
EPITA is established to provide a forum for those working in the field of pancreas and islet of Langerhans transplantation or any other alternative form of beta cell replacement in Europe, to exchange scientific information and views related primarily to providing the best service for patients in Europe requiring pancreas or islet transplantation.
VCA has opened a new era in the field of transplantation, reconstructive and restorative surgery. This Section brings together 10 representatives of major European teams at the forefront in this field.
History
ESOT started building a platform to host pan-European registries in January 2021, leveraging on the experience of its section ELITA which had been successfully coordinating the European Liver Transplant Registry since 1985. The platform was thought of as modular, scalable and able to receive information on different organ transplants: a one-stop solution for European national and local authorities to contribute data and share practice with the community.
In September 2023, the Committee of Ministers of the Council of Europe issued a recommendation to member States on establishing national harmonised organ transplant registries to facilitate international data sharing. In particular, it recommends that the governments of member States promote the development and maintenance of national transplant registries with a view to facilitating harmonisation of the said registries and international data sharing. ESOT welcomes this recommendation and gladly makes its registries platform available to transplantation centres, competent authorities and ministers.
ESOT is a member of the European Health Coalition, a network that aspires to health and care systems centred on people and patients. To make this vision a reality, the European Health Coalition has put forward nine recommendations focusing 4 priority areas (Digital transformation, Health system integration, Boosting research and innovation, and Access to innovation). The ESOT registries are in line with all these recommendations, particularly the following ones concerning data and digital health:
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Funding
ESOT raises funds according to the strategy agreed upon by the Steering Committee with the aim of maintaining the technical infrastructure, providing technical support for users of the registries and widening contacts with participating or interested parties, scientific consortia, the industry and patient associations.
In agreement with its bylaws (Art. 7), ESOT calls for donations, sponsorship contributions, inheritances and legacies to support the registries platform project.
GDPR Compliance
ESOT is fully committed to ensuring compliance with the General Data Protection Regulation (GDPR) to safeguard the privacy and confidentiality of individuals’ data within the ESOT Registries. GDPR sets out strict guidelines and standards for collecting, processing and storing personal data. ESOT understands the sensitivity of the data collected within the registries and takes extensive measures to protect the privacy rights of individuals involved.
To comply with GDPR, ESOT implements robust data protection policies and procedures, including implementing appropriate technical and organisational measures to ensure data security. Access to personal data is strictly controlled and limited to authorized personnel with a legitimate need to access such information. ESOT also maintains data protection agreements with third-party partners and collaborators to ensure that personal data is handled in accordance with GDPR requirements.
ESOT recognises the importance of centres obtaining informed consent from patients to collect and process their data within the registries. Transparent information is provided to participants, outlining the purposes and legal basis for data processing, the rights of individuals, and how their data will be protected.
ESOT is dedicated to ongoing monitoring and reviewing its data protection practices, ensuring compliance with GDPR and evolving best practices. By adhering to GDPR standards, ESOT aims to foster trust, maintain data integrity, and protect the privacy of individuals contributing to the ESOT Registries.
As a data controller, ESOT appointed a Data Protection Officer (DPO) and a legal advisor to conduct the GDPR compliance procedure. The ESOT registries task force has established a data processing agreement (DPA) with the technical partner providing the platform’s infrastructure and data sharing agreements (DSA) with data providers. An independent Data Protection Impact Assessment (DPIA) has been conducted and can be consulted under request to the DPO (dpo@esot.org).
Data collected on the Registries Platform will be stored in the EU (Ireland) and processed by Dendrite Clinical Systems, a UK-based company; data will be released in an aggregated form only. The risk of a data breach is kept as minimal as possible, as described in the ESOT Data Breach Protocol (DBP).
Devi Mey
