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Registries in the Middle East: problems and prospects
Registries in the Middle East: Problems and Prospects A. Naqvi and A. Rizvi
T
O ASCERTAIN the intensity and gravity of a health problem, a central registry is mandatory. As is evident from the US Registry, the details collected help in health planning and budgeting. The developing countries still do not have an accurate Registry system. The population of the MESOT member countries is about 800 million. If the nonmember countries are included, the figure escalates to more than a billion. Focusing on organ transplantation, the range is between 0 and 25 per million population in this region. This involves developing countries with economic constraints, as well as oil-producing areas that may not lack finances but are deficient in adequate skill and expertise. As there is no central registry system, only a few details of the transplantation programme status can be obtained from each region. Registry will help in accurate data collection, comparison of outcome, identification of pretransplantation risks, development of an appropriate and economical immunosuppression regime,1 and tissue-typing technology. Research and trials could be coordinated between various centres. The data available without registry is scanty. Analyzing the figures from Pakistan, it is observed that the prevalence of chronic renal failure is about 100 pmp with 11,520 existing patients with a growth rate of 14%. Annually 650 patients receive a transplant. If every transplant center were to send their accurate figures to a registry, the data would be up to date and the problems identified. The question arises of why a registry is nonexistent in the developing countries. It is presumed that there is concern about confidentiality and insufficient confidence. The transplantation center fears a breach of confidence and that the information may be released to other centers. Also, the number of transplants is variable. The figures of rejection, graft, and patient survival are nonexistent. The centers hesitate to communicate as they do not comprehend the benefits of a registry.
0041-1345/01/$–see front matter PII S0041-1345(01)02125-X 2640
The solution to the problem lies in creating confidence in the system. All transplantologists should understand that a registry will only promote transplantation and that the database will be useful in highlighting important clinical problems and will coordinate research. To observe confidentiality, all centers should have code numbers and the data should be made available to participating institutions only. The mode of communicating the data can be simplified by having access to fascimile, E-mail, newsletters, and submission of an annual report. The funding for running the registry can be made available from the National Transplant Society, MESOT Foundation, and the supporting pharmaceutical industry. The Middle East Transplantation Registry would promote, support, and coordinate transplantation. The available donor organs and tissues could be utilized optimally and the results improved through scientific research. Factors influencing the transplantation outcome would be identified and donors procured to increase the supply of donor organs and tissues. In conclusion, mandatory reporting is possible only through strictly enforceable legislation. Voluntary participation has to be encouraged on priority. Code numbers for centers can ensure confidentiality and electronic mail as means of communication will simplify the system. REFERENCE 1. CTS Collaborative Transplant Study Newsletter 3, 1998
From the Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi, Pakistan. Address reprint requests to Anwar Naqvi, Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi 74200, Pakistan.
© 2001 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010 Transplantation Proceedings, 33, 2640 (2001)
T
O ASCERTAIN the intensity and gravity of a health problem, a central registry is mandatory. As is evident from the US Registry, the details collected help in health planning and budgeting. The developing countries still do not have an accurate Registry system. The population of the MESOT member countries is about 800 million. If the nonmember countries are included, the figure escalates to more than a billion. Focusing on organ transplantation, the range is between 0 and 25 per million population in this region. This involves developing countries with economic constraints, as well as oil-producing areas that may not lack finances but are deficient in adequate skill and expertise. As there is no central registry system, only a few details of the transplantation programme status can be obtained from each region. Registry will help in accurate data collection, comparison of outcome, identification of pretransplantation risks, development of an appropriate and economical immunosuppression regime,1 and tissue-typing technology. Research and trials could be coordinated between various centres. The data available without registry is scanty. Analyzing the figures from Pakistan, it is observed that the prevalence of chronic renal failure is about 100 pmp with 11,520 existing patients with a growth rate of 14%. Annually 650 patients receive a transplant. If every transplant center were to send their accurate figures to a registry, the data would be up to date and the problems identified. The question arises of why a registry is nonexistent in the developing countries. It is presumed that there is concern about confidentiality and insufficient confidence. The transplantation center fears a breach of confidence and that the information may be released to other centers. Also, the number of transplants is variable. The figures of rejection, graft, and patient survival are nonexistent. The centers hesitate to communicate as they do not comprehend the benefits of a registry.
0041-1345/01/$–see front matter PII S0041-1345(01)02125-X 2640
The solution to the problem lies in creating confidence in the system. All transplantologists should understand that a registry will only promote transplantation and that the database will be useful in highlighting important clinical problems and will coordinate research. To observe confidentiality, all centers should have code numbers and the data should be made available to participating institutions only. The mode of communicating the data can be simplified by having access to fascimile, E-mail, newsletters, and submission of an annual report. The funding for running the registry can be made available from the National Transplant Society, MESOT Foundation, and the supporting pharmaceutical industry. The Middle East Transplantation Registry would promote, support, and coordinate transplantation. The available donor organs and tissues could be utilized optimally and the results improved through scientific research. Factors influencing the transplantation outcome would be identified and donors procured to increase the supply of donor organs and tissues. In conclusion, mandatory reporting is possible only through strictly enforceable legislation. Voluntary participation has to be encouraged on priority. Code numbers for centers can ensure confidentiality and electronic mail as means of communication will simplify the system. REFERENCE 1. CTS Collaborative Transplant Study Newsletter 3, 1998
From the Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi, Pakistan. Address reprint requests to Anwar Naqvi, Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi 74200, Pakistan.
© 2001 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010 Transplantation Proceedings, 33, 2640 (2001)