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The Chair's report for the periode 2011-2012

Scandiatransplant 02.05.2012

 

The Chairman’s report for the period 26.5.2011-30.4.2012 to be presented at the meeting of the Council of Representatives 09.05.2012, Reykjavik.

During 2011 a record number of organ donors and transplantations were performed in the Nordic countries. By having a new record of Deceased Donors (26 pmp) Norway is challenging the nr 1 post of Spain in organ donation in Europe. The implementation of the Action plan of the EU53/2010 Directive has led to new transplantation laws in most Nordic countries. It is certainly a very central issue for Scandiatransplant as well.

 

The Board

Krister Höckerstedt, Finland - chair

Kaj Anker Jörgensen, Denmark

Helena Isoniemi, Finland

Michael Olausson, Sweden

Pål-Dag Line, Norway (new) *

Margrét Birna Andrésdóttir, Iceland

* Per Pfeffer has served two periods in the Board and was succeeded by Pål-Dag Line, also a surgeon in OUH. Dr Pfeffer has, among many other commitments, given international stamina to the discussions in Scandiatransplant, since he served as head of the Transplant Committee in the Council of Europe.

The Board had four official meetings and numerous discussions by phone and email. In addition the Board had not only one annual but two extra meetings with the Representatives of the Nordic National health authorities. Actually, all issues given in this report have been discussed in detail by the Board.

 

The Scandiatransplant office

The personnel is Niels Grunnet, Frank Pedersen, Bo Hedemark Pedersen, Ilse Duus Weinreich, Christian Mondrup, Camilla Möller Pedersen (new) and Susanne Sönder. In addition to the intensified day-to-day work the personnel has assisted the Board, all committees and groups, improved the data system and prepared new forms. They have also solved an emergency situation in the Sctp connections to European OEOs caused by the introduction of a new telephone system at the Skejby hospital. The chairman has had discussions with the personnel on their specific working tasks. They may change in the nearest future when the EU53/2010 Directive is implemented in the Member States and Scandiatransplant too. Discussions have been initiated on a possible move of the office to other locations in the Aarhus University area.

 

Newsletters

Two Scandiatransplant newsletters have been produced in 2011 and sofar one in March 2012 by Frank Pedersen and Ilse Duus Weinreich. Niels Grunnet and Susanne Sönder have presented a lot of new data from the office and Bo Hedemark Pedersen has kept us up-to-date on the latest developments of the IT-programs, as well as designed new forms. www.scandiatransplant.org/news

 

Center changes in 2011

In the Nordic countries the total number (10) of transplant hospitals was maintained. In Helsinki in March 2011 the kidney transplantation activity of the Transplantation and Liver Surgery Clinic has joined the activities of the adult liver and pancreas transplantations of the same clinic at the Meilahti Hospital campus of the Helsinki University Hospital. Previously the transplantation of the thoracic organs and the children have from the beginning been located at this campus. Thus, all transplantation clinics are now on the same campus. It should be noted that three prominent Norwegian transplant colleagues will end their work in the Oslo University Hospital by this Summer. They are Per Pfeffer, Öystein Bentdal and Björn Lien.

 

Activities in 2011

Activities in the Nordic countries registered by the Sctp office are presented in detail by the MD Niels Grunnet (www.scandiatransplant.org). The following observations may be pointed out:

- A new record in the number of Utilised Deceased Donors (DD) was seen = 436 (17 pmp). An immense increase was seen in Norway with 26 DDs pmp, which is the result of detailed national planning of the organ donation during the last 10 years.

- The total number of transplantations (1838) is also a new record. The numbers increased clearly in the transplantation of all other organs except for the hearts. This year the percentage of living donor kidney transplantation was largest in Denmark (42,6%) and the lowest in Finland (7,3%). A total number of 2093 patients were on the Scandiatransplant waiting list at the end of 2011.

- The organ exchange was again highest for hearts (24%) and lowest for kidneys (15%). Of the patients accepted on the waiting list during 2011 the following percentage were transplanted by December 31: Liver patients 71%, Heart patients 54%, Lung patients 51% and Kidney patients 38%.

 

Activities of the Scandiatransplant groups

All Scandiatransplant groups have held their regular meetings once or twice in 2011. See Scandiatransplant homepage: www.scandiatransplant.org

The organ exchange rules are regularly up-dated, see the the homepage. The Nordic Liver Transplant Group has increased the scientific activities. The registry of this group (NLTR = Nordic Liver Transplant Registry) is the only one which has produced annual reports from the early 1990-ies, the latest is published in 2011. Waiting list data and transplantation results are included. The present custodian in charge is Tom Hemming Karlsen, Oslo.

The Tissue Typers group (Torbjorn Leivestad) have given the first results of using the new STAMP exchange rules, which seem promising.

The Nordic Thoracic Transplant Group has presented detailed issues in 2010 including results (Frank Pedersen and Christian Mondrup. New projects have started.

The Nordic Pediatric Renal Transplant Group has launched data on activities including results during 1994-2010. See homepage.

The Nordic Transplantation Coordinator’s Group (NTCG) chaired by Carola Schauman had a two day meeting in April for the coordinators of all transplant centers. It was an extended meeting as it contained the coordinators annual meeting and in addition a course given by Frank and Ilse. www.scandiatransplant.org/members/ntcg/Minutes_NTCG_2012.pdf

 

Scandiatransplant Research Grant

To support initiation of inter-Nordic research projects in relation to Scandiatransplant a new Grant of 20.000€ was launched in 2011. The winner was Aksel Foss et al. with the application: “Liver Organ Donors >75 years”. The winner of the 2012 grant will be announced at the Representatives’ meeting 09.05.2012. In 2013 the sum of the Grant is raised to 40.000€.

 

The Scandinavian Travel Sponsorship, DKK 100.000.

The applications of the following persons were approved this year: Kristine Andreasson, Lars Bäckman, Emma Högström, Marko Lempinen and Lonnie Rasmussen.

 

UEMS Transplantation Division of the Department of Surgery has since 2008 performed exams for transplant surgeons in organ donation, kidney, liver and pancreas transplantation. About 250 European surgeons have passed the exams, some of them from the Nordic countries. UEMS Board of Transplant Coordinators (BTC) has certified an increasing number of coordinators, also from the Nordic countries. Käthe Meyer is the treasurer of BTC.

 

European Union meetings on the implementation of EU53/2010 Directive on “The safety and tracability of organ donation and transplantation.”

The Member states shall bring into force the laws, regulations and administrative provisions necessary to comply with this Directive by 27 August 2012. The Directive contains an Action Plan with 10 articles. It should again be noted that the Action Plan is a recommendation – not mandatory. The Directive includes an Annex Part A with a minimum list of data for organ and donor characterisation to be collected for each organ donation. In Part B an additional Complementary data set characterisation of grouped data are suggested, which may be collected based on the decision of the national authorities and the medical teams. The EU Directive Action plan has been discussed after May 2011 at five meetings in Brussels, usually chaired by Stefaan van der Spiegel. Since May 2011 a new secretary was elected: Helene le-Borgne, Helene.le-Borgne@ec.europa.eu. At the latest EU-meeting, April 24, 2012 the data in the Annex A were in essence agreed upon.

Participants have been the competent authorities (= National health authorities) and transplantation experts of the 27 Member States as well as Scandiatransplant, Eurotransplant, ONT and WHO (c. 50 persons). All Nordic countries have participated, both competent authorities and transplant experts, i.e. the surgeons and physicians.

- How to organize the 24/7 duty of reporting SAE/SAR was also debated at the latest EU meeting. It was concluded that only the transplant centers involved have the knowledge and possibility to act fast enough to prevent any possible damage and complication in the recipients of organs from such a particular donor with SAE/SAR. It is for the competent authorities to organise this in each EU Member state.

- The handling of the SAE and SAR should be explored further. The main goal is to make sure that any of these observed in the donor are without undue delay reported to all parties concerned.

At a EU-meeting in 2011 new definitions on organ donors were accepted. They will be used in the annual report of the European Council and also by Scandiatransplant and the Nordic countries:

Actual donor = A donor from whom at least one solid organ has been retrieved for the purpose of transplantation.

Utilised donor = An actual donor from whom at least one solid organ has been transplanted

 

Meetings of the Scandiatransplant Board and the representatives of the Nordic National Health Authorities

The implementation of the Action plan of the EU53/2010 Directive has been intensively discussed nationally and within Scandiatransplant. To fulfil the issues of this Directive each Nordic country - including Norway and Iceland - should

a) adjust the law and appropriate regulations accordingly

b) select the appropriate data to be collected

c) produce a national register on suitable variables before 27th of August, 2012.

The Scandiatranplant Board had its annual meeting with the representatives of the Nordic National Health Authorities in September 2011. The implementation of the Directive was well under way in Norway and Denmark, whereas less discussions had been made in the other Nordic countries. The Swedish lawyers wanted more information on the data security aspects when data of donors and patients were transferred between the Nordic countries and Scandiatransplant. In order to solve many open questions, two extra meetings were held, the latest in April 16. The conclusions from these meetings were:

- The role of Scandiatransplant as an OEO of the five Nordic countries was acknowledged by the Nordic Health authorities and the transplant centers.

- Different suggestions have been suggested on how the implementation by the EU 53/2010 Directive could be managed in order to comply with the laws of the five Nordic countries and the Articles of Scandiatransplant.

- All participants agreed that the present activities of Scandiatransplant should continue.

- As for Scandiatransplant data security the main rule is that any personnel should only have access to data on patients that is needed for a specific task.

- The changes needed in the Scandiatransplant registries are minor and can be performed.

- It was agreed that Scandiatransplant will provide a list of personnel in the

Scandiatransplant office and the 10 transplant centers in the Nordic countries, who have different levels of access to any organ donor and recipient patients data.

- The discussions between Scandiatransplant, the National health authorities of the Nordic countries and the transplant centers will continue with an aim to reach solutions acceptable to all parties.

 

Scandiatransplant and Estonia

Estonia has for many years had collaboration in transplantation with Eurotransplant (ET). Recently Estonia has also showed an interest in collaboration with Scandiatransplant. Many Estonian transplant surgeons have been trained abroad, particularly in Helsinki where the Scandiatransplant chairman has in 1990 initiated and fostered the liver transplant program in Tartu. Also in kidney transplant programs both teaching and scientific collaborations between Helsinki and Tartu have long traditions. It should be stated that no organs have been exchanged between Finland and Estonia or any other Baltic countries.

In 2010 the Tartu University Hospital director Urmas Siguur sent Scandiatransplant a letter exploring future collaboration with Sctp. The former Sctp chairman Arnt Jakobsen replied that non-Nordic countries cannot be members of Sctp, but perhaps a collaboration like the twinning system might be a workable solution between Estonia and Scandiatransplant. However although such activities are common for instance in Eurotransplant, it would need opening up a new form of activity within Scandiatransplant.

 

In January 2011 Virge Pall, Transplantation Director in the Tartu University Hospital informed that a new Transplantation Center at Tartu University Hospital (TUH) has been founded. She proposed collaboration possibilities with Scandiatransplant. The Sctp Board has discussed this issue repeatedly and concluded that collaboration may start with Scandiatransplant and Estonia if the following conditions are met:

1) The Transplantation Centre at Tartu University Hospital represents the OEO of Estonia,

2) Formal accreditation of activities related to transplantation of this Centre and the donor hospitals in Estonia is shown.

The same year the appropriate Ministry in Estonia has declared that TUH is also the official Organ Exchange Organisation in Estonia. Dr Pall has sent a presentation of the Estonian transplantation programme, which started in 1968. The number of transplants in Estonia performed so far are: 918 kidneys, 25 livers (21 functioning) and 6 lungs (all functioning). All transplantations are performed in Tartu University Hospital. Since 2007 Estonia has had deceased organ donors between 16.9 and 24.6 pmp annually. The two largest donor hospitals are Tallinn and Tartu. Kidney exchange has annually been performed with Latvia. With a twinning agreement with Eurotransplant (ET) lungs from 7 donors have been sent to Vienna, Austria, where two Estonian patients have received a lung transplant. One liver has been sent to ET.

Organ transplantation activities in Estonia:

http://www.scandiatransplant.org/about-scandiatransplant/scandiatransplant-representatives/Estonia%20Tx%20presentation%20May%203%202012.VPall..pdf

In December 2011 the Director of the Tartu University Hospital Urmas Siigur sent a letterto Scandiatransplant with an application of Estonia to become a full member of Scandiatransplant.

The Board has approved the application and decided to suggest to its owners and users that (in princip) Estonia could become a member of Scandiatransplant. An obvious prerequisite is that Estonia approves the guidelines and rules of Scandiatransplant and its members. However, to include a non-Nordic country as a member of Scandiatransplant would mean a fundamental change in the 43-year activities of Scandiatransplant. Hence it is clear that this matter has to be discussed thoroughly within the Association of Scandiatransplant and the owners and users, the transplant centres of the Nordic countries. Also the National Competent Authorities of the Nordic countries, i.e. the representatives of the Ministries for Health and Social Affairs and corresponding authorities have to be heard.

The final decision in this matter lays in the hands of the Council of Representatives, which is the Association of Scandiatransplant’s supreme authority. The first general discussion will take place at the Scandiatransplant meeting of the Council of Representative on May 9 in Reykjavik.

 

The History of Scandiatransplant

Arnt Jakobsen, the former Transplant surgeon and chief physician at Rikshospitalet, Oslo, previous Chairman of the Scandiatransplant Board has initiated and started the project. He will visit the Scandiatransplant office and the different transplant hospitals and institutions in order to interview colleagues and other personnel from specific periods of Scandiatransplant.

 

Krister Höckerstedt

Chair, Board of Scandiatransplant