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Updated: Aug 26, 1998 |
This is the most recent structured information on this project. Complementary data can be found on previous documents | |
RETRANSPLANT
Regional and international integrated telemedicine network for medical assistance in end stage disease and organ transplant project. | |
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The RETRANSPLANT project aims to facilitate the development of Telematics tools for dialysis and organ transplant centers, organisations coordinating recipient-donor selection, and other health care facilities for transplant services in the Central Eastern European Countries (CEEC). In Europe, as a rule, donor organs are matched to recipients by national or multinational organ-sharing organizations. EUROTRANSPLANT, for example, serves medical institutions in Germany, Austria, and the Benelux states, HUNGARO-TRANSPLANT in Hungary, and SLOVENJA-TRANSPLANT in Slovenia. During the project lifetime the RETRANSPLANT consortium will carry out the following outcome: First the partners will implement an electronic patient database for transplant waiting list, donor-recipient matching, organ allocation, and patient selection in the Czech Republic, Lithuania, Hungary, Slovak Republic, Slovenia, and Poland. Recipient - the Donor Selection (RDS) network will help an optimal use of available donor organs and tissues. It is obvious that such activity is useful for both parties i. e. the EU and CEEC. Any potential donor in the CEEC countries might become matched for a EU patient and vice versa. The DialysisCard and TransplantCard have to be seen as an identification card, additional data storage and management tool for dialysis and transplant patient in Hungary and Slovenia. The communication model allows for different types of workstations for the different environments to communicate with these active memory Smart Cards. Implementation of an Electronic Medical Record (EMR) system at the organ transplant centres in Hungary (Budapest, Szeged), and Slovenia (Ljubljana) comprises all clinical records. The EMR contains standardised codes and information about diagnoses (ICPC/ICD10), drugs, procedures, investigations, laboratory tests. etc. To ensure standardised and identical information, it is recommended that these indexes are updated centrally. This makes it easier to transfer information about the patients from one health care facility to another.
In the overall medical strategy, improvement of the quality and reproducibility of diagnostic and interventions is a continuous concern, which has come to the point where the transplant surgeons are eager to access the image of histopathology samples, X-rays, ultrasound images, or critical care data at the time of the surgery, using the same ISDN line for on-line consultation. The ISDN/PC-integrated Multimedia Patient Records (MPR) provides integrated network of complementary services (teleradiology, telepathology, telematics for anaesthesia) for organ transplant at Budapest and Szeged in Hungary and at Ljubljana in Slovenia. The participating Recipient - Donor Selection Organisation and the Organ Transplant Centres are integrated into a Regional Transplant Network (RTPN) in Hungary and Slovenia. RTPN coordinates donor hospitals, dialysis centres, recipient-donor selection organisation, other health care facilities for transplant services, and healthcare professionals. Interconnect and integrate the national networks and link to an existing international service result in to an International Transplant Network (ITPN).
Using health telematics tools, RETRANSPLANT will speed up the overall search process for a donor and recipient and the organ transplantation at national and regional level:
The users in this project can be clearly identified as the Tissue Typing and Clinical Transplant Centers in the 6 countries involved from CEEC; Czech Republic, Hungary, Lithuania, Poland, Slovak Republic, and Slovenia. Regularly they are separated into clinical transplant centers for organ transplantation (mostly surgical or nephrology departments of the respective hospitals) and clinical transplant centers for bone marrow transplantation (mostly departments for hematology and/or oncology of the respective hospitals). In organ transplantation all patients accepted for the transplant program are listed on the PATIENT WAITING LIST. All the patients have been previously typed for TA (HLA) antigens. When one (mostly cadaver) kidney becomes available the relatively most suitable combination (TA matching) is selected. However, the selection of ( relatively) suitable pairs must occur on the basis of a maximal possible choice. Therefore national and supranational (international) waiting list are joining or cooperating. Because there are economic and technical limitations (time limit, transport etc. ) only somehow limited cooperation is possible. Thus, France Transplant, Scandia Transplant and EUROTRANSPLANT, and other organizations are functional. On the individual National or Supra-National waiting lists there are more than thousand of patients, each with its blood group, HLA type and a number of other factors important for the final selection. Clearly, neither the database nor the selection procedure itself is possible without information technology. This involves mutual contacts between the multiple individual transplant centers ( e. g. more than 50 in EUROTRANSPLANT ) and the center which provide the organ. The transportation time limit is different by organs, for kidney transport there is a time limit of about 12-24 hours.
A second main domain for transplantation is bone marrow transplantation (BMT). This is mainly for patients with malignant blood disease (leukaemia) and/or other bone marrow deficiencies. The transplant organization for BMT occurs in a different situation. There are sufficient donors, i.e. volunteer bone marrow donors, at least in countries with well organised Bone Marrow Registers. At present there are almost 4,000.000 HLA donors registered. National registers contain several hundreds or thousands of donors (up to more than 200.000 donors registered in one center). The national registers are joining the supranational registers, in Europe managed by different organizations, like EUROPDONOR. These networks are BMDW and EDS and the new system of EMDIS which is close to be completed. In bone marrow transplantation, the problem is not graft rejection but the potential reaction of the transplanted bone marrow cells against the recipient (the Graft-versus-Host Disease GvHD). Because of these circumstances the requirement for high level matching and donor/recipient pair selection are more stringent than for organ transplantation. Donor registers of more than 100.000 are needed to provide a significant chance for a random patient. This is of course still no warranty for every patient (ethnic differences, rare HLA phenotypes, etc.).
Both for organ and bone marrow transplantation the consequence of these complex situation(s) is that effective transplantation medicine is not possible without well functioning information technology and telecommunication. Information technology became an inevitable and inherent part of transplantation medicine. Nevertheless, there are difficulties in applying the transplantation information technology in different countries due to various reasons. This project aims to facilitate and realize introduction of information technology in Central and Eastern Europe countries(CEEC).
Quality of treatment depends on the availability of the relevant and up-to-date information and on the outcome of the intervention. Getting access to this information is often difficult, even more so, when the patient is treated by several people, in various institutions and over a long period as in the case of a person with a chronic disease.
The aim of the RETRANSPLANT project is to act as a catalyst for the integration and uptake of medical telematics in the field of end stage renal diseases (ESRD) and organ transplant, through consensus activities and by providing reference implementations. End stage disease related research and treatment is a particularly appropriate area of medicine on which to focus, given the scale of the organ transplant problem in Europe and the opportunities offered by telematics. Organ transplant in Europe is characterised by the geographical spread of patients and transplant centers, a slow rate of dissemination of best practice from research to treatment, and inconsistencies in quality assurance leading to differences in outcomes between treatment centers.
Telematics will play a vital role to enhance quality and efficiency in the treatment of ESRD and organ transplant and in other medical disciplines. It will provide access to work has done before in the field health telematics funded by the European Commission. Those include electronic patient data communication, European health card, multimedia medical information on a European scale by the partners. Additionally, there is a drive in Europe for gains in efficiency through integrated care programmes, better accessibility of diagnostic results and services like organ donor databases. All these possibilities are critically dependent on telematics for widespread adoption.
Fifteen medical units of the Central and Eastern European Countries participate in the project. In the work has done before of the RETRANSPLANT project, they took part in the definition of the users requirements in terms of medical objectives and functional specifications. A common project RETRANSPLANT will the final result of this phase. The introduction of these new technologies in medical units can bring some modifications in the organisation of the work within the medical unit. The organisational benefit of these changes must be evaluated, as well as the relevance of the prototype networks with respect to functionalities that will be of help in the daily management of the patients and for quality assurance.
During the Recipient-Donor Selection (RDS) partners will validate the RDS System. The system is based on ISDN, which is currently the cheapest locally offering sufficient bandwidth. Central services will be implemented at the National Transplant Centers, with links to the recipient-donor selecting units and to the institutes providing multimedia on-line consultations (aneasthesia, intensive care, pathology, radiology). In parallel Dialsysis and Transplan Card pilots will take place, in two countries Hungary and Slovenia in 1998/99. Some communicational aspects will be evaluated, at the same time this test will serve to prepare for the full implementation in Hungaro and Sloven-Transplant, planned for year 2000.
In the Regional Trans-plant Network (RTPN), partners will countinue the validation of chipcard. Register all the patient on dialysis converted to an electronic patient database on chipcard in Hungary and Slovenia involving 3,500 patients. Dialysis and Transplant Card will create an open architecture which is flexible and upward compatible. This means that the architecture is compatible and can easily be integrated into existing information systems and networking environments. Validation Electronic Medical Record (EMR) system at the organ transplant centres in Hungary (Budapest, Szeged), and Slovenia (Ljubljana) is equally important in RTPN. Users will use the MEDEX system. The program contains standardised codes and information about diagnoses (ICPC/ICD10), drugs, procedures, investigations, laboratory tests. etc. To ensure standardised and identical information, it is recommended that these indexes are updated centrally. This makes it easier to transfer information about the patients from one health care facility to another. The ISDN/PC based Multimedia Patient Records will provide integrated network of complementary services for organ transplant (teleradiology, telepathology, telematics for anaesthesia) at Budapest and Szeged in Hungary and at Ljubljana in Slovenia.
In the International Transplant Network (ITPN) partners will interconnect and integrate the national networks and link to an existing international services will result in: reduction of the organ shortage, and to increase the survival rate of the transplant patients.
The integration of networks: tissue typing and patient selection and matching laboratories, national organ transplant organisations, organ transplant surgical clinics and the connected institutes will be achieved in the framework of the ACTION cluster of projects.
Technology Implementation (TI)
TI 1 Electronic medical record (EMR) at the dialysis centers in Hungary and
Slovenia. 6 months P
TI 2 Adaptation the MEDEX, and implementation of EMR system at the transplant centers in Budapest, Szeged and Ljubljana. 9 months P
TI 3 Multimedia System (PC/ISDN) in Budapest, Szeged and Ljubljana.6 months R
TI 4 MEDANINFO Critical Care System in Budapeat and Ljubljana. 12 months P
TI 5 Implementation of the Multimedia Patient Record (MPR) in Budapest,
Szeged and Ljubljana. 9 months P
TI 6 Final demonstration, summary report. 12 months R
Validation(VL)
VL I. Recipient - Donor Selection (RDS)
RDS 1 Adjustment of SELECT 4.0 software to the users needs in Czech Republic, Lithuania, Hungary, Slovak Republic, Slovenia, and Poland. Flexibility in data handling, for report definition, for human language. 6 months P
RDS 2 Menu driven criteria editing. 9 months P
VL II. Regional Transplant Network (RTPN)
RTPN 1 Implementation Dialysis and Transplant Card in Budapest and Ljubljana. 9 months R
RTPN 2 Validation of EMR in Budapest, Szeged and Ljubljana. 12 months
Year 2
VL I. Recipient - Donor Selection (RDS)
RDS 3 Improved archives. (All matching lists are stored. Patient records removed from waiting list (archive) are also accessible from the software.) 18 months P
RDS 4 On line access to HLA laboratories. The matched lists are also be sent on line to a remote user. 21 months R
RDS 5 ICD support. The software supports the international Classification of Diseases (ICD) version 9 or 10 as required. 24 months P
RDS 6 Final demonstration, summary report. 24 months R
VL II. Regional Transplant Network (RTPN)
RTPN 3 Validation of MPR including telepathology, teleradiology telematics for anesthesia in Budapest, Szeged and Ljubljana 18 months R
RTPN 4 Interconect Recipient - Donor Selection system and the Transplant Centers from Budapest, Szeged and Ljublajana. 24 months R
RTPN 5 Final demonstration, summary report. 24 months R
Year 3
VL III. International Transplant Network (ITPN)
ITPN 1 Interconect the national RTPN and validate the International Transplant Network (RTPN). 27 months P
ITPN 2 Integration on the European level. 27 months P
ITPN 3 DEMONSTRATION, REPORT 30 months P
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