الفهرس 
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Abstract
It is well known that improvement of human health services depends heavily on the development of accurate health information. Although there are several attempts to investigate the problem of genetic diseases in Egypt, still there is lack of knowledge about national pattern, magnitude and determinants of these diseases. This gap of knowledge may affect the judgment of decision makers and practitioners to develop programs for prevention and control of genetic diseases.
Beta-thalassemias are examples of diseases of major public health importance. It is estimated that over 1000 of the annual 1.5 million newborns are expected to be affected with this disorder in Egypt. Establishment of patient database and screening of the mutant gene carriers whether during routine schedules or during national campaigns, are the cornerstones for prevention of these diseases in childhood. An Egyptian- specific mutation spectrum analysis will facilitate the development of future diagnosis procedures; in addition to its importance in population- specific research.
In the current study, we aimed to establish a backbone for Thalassemia information system by developing an accurate, comprehensive, and upgradeable database among Thalassemia patients attending the haematology unit, pediatric department in Ain Shams University. Trial for development of a computerized medical record program for filing and analyzing medical record data. The information system component for Thalassemia patients are a local Thalassemia patients information collection management system.
The present work started by reviewing all available data concerning Thalassemia patients. The available data included few summary tables for blood diseases patients treated by the unit from 1974 till 2001 in the form of a word file using an old McIntosh software.The forms completed by the pediatricians were not structured and data was presented as a hand writing text.New forms (15) have been designed to fulfill all the information needed by a pediatrician to follow a thalassemic patient. Though forms are relatively many but only one form (follow up form) is the only form that is needed to be regularly completed to monitor the health status of a thalassemic patient.
An ACCESS database was designed to include all new forms and at the same time easy to be completed and retrieved by a non professional staff.All data in the old forms were extracted and entered into the newly designed database program. The new database yielded more information about socio-demographic, epidemiological and clinical data that could be used to improve the quality of services provided to this type of chronic patients.
The objectives were achieved through:
1- Assessment of current status of Beta-thalassemia patients haematology unit, pediatric department in Ain Shams University. through collection of the available research, reports, and data related to the subject and prepare review article about the current status of Beta-thalassemias in Egypt.
2- The development of models for data collection and patient follow-up.
3- Establishment of the necessary programs and software
4- Revision of the available patient’s information and entry of this information to the prepared computer program.
5- Analysis of the data available in the patient based database.
We hope that the designed database be able to help improve the performance of health service provided to these patients.