Organ Donation Registries and Transplant Data

International Registry in Organ Donation and Transplantation (IRODaT) www.irodat.org/ WHO Global Observatory on Donation and Transplantation (GODT) www.transplant-observatory.org Council of Europe: Newsletter Transplant: International figures on Donation and Transplantation 2014 https://www.edqm.eu/sites/default/files/newsletter_transplant_2015_2.pdf Bone Marrow Donors Worldwide www.bmdw.org Familial Amyloidotic Polyneuropathy World Transplant Register www.fapwtr.org International Intestinal Transplant Registry www.intestinaltransplant.org/itr International Islet Transplant Registry www.med.uni-giessen.de/itr International Pancreas & Islet Transplant Association (IPITA) www.tts.org/ipita/valuable-resources-and-links/registries International Registry for Heart and Lung Transplantation (ISHLT) www.ishlt.org/registries/heartLungRegistry.asp   Australia and New Zealand: Organ Donation and Transplantation Registry www.anzdata.org.au Collaborative Transplant Study (CTS) (Heidelberg University) http://www.ctstransplant.org European Liver Transplant Registry www.eltr.org European Renal Association - European Dialysis and Transplant Association Registry - ERA-EDTA www.era-edta.org/ Eurotransplant statistics (Austria, Belgium, Germany, Luxemburg, the Netherlands, Slovenia and Croatia) http://www.eurotransplant.org/cms/index.php?page=yearlystats Indian Transplant Registry www.transplantindia.com La Sociedad de Transplante de América Latina y el Caribe (STALYC) registry http://www.stalyc.net/en/registry.html Scandiatransplant (Island, Norway, Finland, Denmark and Sweden) www.scandiatransplant.org/data/scandiatransplant-figures United States of America: Scientific Registry of Transplant Recipients (SRTR) www.srtr.org/ United States of America: United Network for Organ Sharing (UNOS) www.unos.org/data/

Declaration of Istanbul Custodian Group

About the Custodian Group The Mission of the Declaration of Istanbul Custodian Group (DICG) is to promote, implement and uphold the Declaration of Istanbul so as to combat organ trafficking, transplant tourism and transplant commercialism and to encourage adoption of effective and ethical transplantation practices around the world. Visit the DICG website The Role of the Custodian Group The role of the DICG is to develop a comprehensive strategy and implement plans to achieve its mission and to coordinate activities related to the Declaration of Istanbul. The DICG operates in the context of complementary documents, in particular the WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation. DEVELOPMENT The Steering Committee of the Istanbul Summit has worked to prepare for the creation of the DICG at a series of meetings following the 2008 Istanbul Summit. On September 30, 2009, the Steering Committee of the Declaration of Istanbul met in Beirut, Lebanon, in conjunction with the Congress of the Asian Society of Transplantation, to formulate a strategy and plans for the continued implemention of the Declaration. A series of goals were developed to achieve the mission of the DICG and to coordinate activities related to the Declaration of Istanbul. These goals include measures to enhance compliance with the Principles of the Declaration by professional societies, pharmaceutical companies and other organizations funding transplantation research, and journals publishing reports of clinical and research activities in transplantation. These goals also emphasize the need for national governments, regulatory authorities and healthcare institutions to develop policies that put an end to commerce in human organs. The DICG was formally established in 2010. ORGANIZATION The DICG is composed of a number of task force groups under the leadership of two chairs. Dr. Beatriz Dominguez-Gil and Dr. Elmi Muller currently serve as Co-Chairs. Dr. Delmonico serves as Senior Advisor to the DICG Board of Councillors. SELECTION of MEMBERS All participants in the Istanbul Summit meeting are invited to play a continuing role in the work of the DICG. DICG membership is open to all those who have actively participated in previous DICG meetings and activities, who are committed to the principles outlined in the Declaration itself, and who wish to assist in the ongoing mission of the DICG, namely, "to promote, implement and uphold the Declaration of Istanbul so as to combat organ trafficking, transplant tourism and transplant commercialism and to encourage adoption of effective and ethical transplantation practices around the world." New members join the DICG through a process which requires them to commit to the Declaration's principles in their own practice, and to support the mission of the DICG. Prospective members must be nominated by an existing member, provide a brief CV and a statement detailing their experience, expertise and interests of relevance to the DICG mission. Nominations should be sent to the DICG Executive for review.

Guidelines

The Declaration of Istanbul on Organ Trafficking and Transplant Tourism www.declarationofistanbul.org/ The Madrid resolution on organ donation and transplantation: national responsibility in meeting the needs of patients, guided by the WHO principles. Transplantation. 2011;91 Suppl 11:S29–31. pmid: 21633281 The critical pathway for deceased donation: reportable uniformity in the approach to deceased donation. Transplant Int 2011; 24: 373–378. http://onlinelibrary.wiley.com/doi/10.1111/j.1432-2277.2011.01243.x/epdf WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation http://www.who.int/transplantation/Guiding_PrinciplesTransplantation_WHA63.22en.pdf?ua=1 Resolution WHA63.22 Human organ and tissue transplantation. In: Sixty-therd World Health Assembly, May, 2010: World Health Organization; 2010 http://apps.who.int/gb/ebwha/pdf_files/WHA63/A63_R22-en.pdf?ua=1 Council of Europe/United Nations Study: Trafficking in Organs, Tissues and Cells and Trafficking in Human Beings for the Purpose of the Removal of Organs (2009) https://www.edqm.eu/sites/default/files/medias/fichiers/Joint_Council_of_EuropeUnited_Nations_Study_on_tra1.pdf Council of Europe resolutions, recommendations and reports – 2nd Edition (2012). Organ, Tissues and Cells: Safety, Quality and Ethical Matters Concerning Procurement, Storage and Transplantation https://www.edqm.eu/medias/fichiers/organ_tissue_and_cells_free_publication.pdf

Associated Organizations and Topics

International Donation and Transplantation Institute (DTI) DonorAction International Pediatric Transplant Association International Registry in Organ Donation and Transplantation (IRODaT) International Society for Heart and Lung Transplantation International Transplant Coordinators Society International Transplant Nurses Society The Transplantation Society (TTS) Transplant Recipients International Organization WHO Global Observatory on Donation and Transplantation (GODT) World Transplant Games Federation Region: Europe European Heart and Lung Transplant Federation European Society of Transplantation European Transplant Coordinators Organization Eurotransplant Scandia Transplant Austria: Austrotransplant Croatia: Donor Network of Croatia Czech Republic: Czech Transplantation Coordinating Centre (KST) Estonia: Tartu Hospital University France: French Federation for Organ Donation Germany: Deutsche Stiftung Organtransplantation (DSO) Greece: Hellenic National Transplant Organization Italy: Centro Nazionale Trapianti (CNT) Lithuania: Lithuanian Bureau on Organ Transplantation Netherlands: Nederlandse Transplantatie Vereniging Norway: Rikshospitalet / Radium Hospitalet Poland: Poltransplant Portugal: Instituto Portuguese do Sanque e da Transplantacao Romania: National Transplant Agency Slovakia: Slovaq Centre on Organ Transplantation Slovenia: Institute of the Republic of Slovenia for the Transplant of Organs and Tissues Slovenija Transplant Spain: Organización Nacional de Trasplantes (ONT) Sweden: Swedish Council for Organ and Tissue Donation Switzerland: Swisstransplant for Solid Organ and Partial Tissue United Kingdom: National Health Service Blood and Transplant Region: North America Canada: The Canadian Association of Transplantation Canada: Canadian Transplant Society Canada: Canadian Blood Services – Organ and Tissue Donation and Transplantation Cuba: Grupo de Coordinación Nacional de Trasplantes Mexico: Centro Nacional de Trasplantes (CENATRA) United States of America: Association of Organ Procurement Organizations United States of America: Donate Life America United States of America: North American Transplant Coordinators Organization United States of America: Organ Procurement and Transplantation Network United States of America: United Network for Organ Sharing Region: South America Argentina: Instituto Nacional central Unico Coordinator de Ablacion e Implante Bolivia: Comision Coordinadora nacional de Trasplantes de Organos y Tejidos de Bolivia Brazil: Coordenaçao -Geral do Sistema Nacional de Transplantes Chile: Corporación Nacional de Trasplantes de Chile Colombia: Red de Donación y Trasplante: Instituto Nacional de Salud Uruguay: Instituto Nacional de Donación y Trasplante de Células, Tejidos y Órganos (INDT) Venezuela: Sistema de Procura de Órganos y Tejidos Region: Asia India: DonateLife India Japan: Japan Organ Transplant Network Korea: Konos Korean Network for Organ Sharing Malaysia: Malaysia Society of Transplantation Pakistan: Sindh Institute of Urology and Transplantation Singapore: National Organ Transplant Unit Region: Middle East/Africa Saudi Arabia: Saudi Centre for Organ Transplantation Tunisia: Centre National pour la promotion de transplantation d'Organes Turkey: Turkish Transplantation Society Region: Oceania Australia and New Zealand: Transplantation Society of Australia and New Zealand Organ Donation and Transplantation Registry Australia: Organ and Tissue Authority New Zealand: Organ Donation New Zealand