Abstract
According to advance technology now the patients who suffered from hematologic malignancy can be cured or at least live longer with better quality of life. However the standard treatments that were used internationally are costly and it is impossible to give best treatment to every Thai patient who suffered from hematologic malignancy due to shortage of budget and man power involved in this problem. In routine practice there are variation on investigations and treatments depend on the patients socio-economical status and health insurance scheme leading to difference cure rate and survival time of the patients. The suitable clinical practice guideline (CPG) for treatment of this group of disease in Thailand can not establish at present because of lacking basic data about the situation of these disease in our country. To establish disease registry of hematologic malignancy would give the information about epidemiology, variation of practice and clinical outcome which is useful for developing suitable CPG for treatment of hematologic malignancy in Thailand.The study was performed by establish the network of hematologist form 9 leading institute in Thailand who deliver treatment to this group of patients working together to create case record form. System of data collection and quality control concurrent with development of web base data entry system was done in the first 6 months of the project, starting on January 15, 2003. Then the process of data collection and data entry on web was performed during July 1, 2003 to March 30, 2004. The quality controlled and monitoring was performed concurrently. It was planned to register the patients and follow up them for at least 3 years.During the first 9 months of data collection there were 1,124 patients registered to the system. The diagnosis were malignant lymphoma 51.2%, acute leukemia 20.3%, CML 10.7%, multiple myeloma 7.7% . About the expense of treatment, 56.5% of the patients using universal health coverage or “30 baths” scheme, 26.3% using government welfare, 6.8% under social security scheme and 8.7% pay out of pocket. The patients who are under government welfare have tendency to receive more effective and expensive treatment than patients under other scheme. There is an interesting data that 12.2% and 8.3% of lymphoma patients infected by viral hepatitis and HIV consecutively.There are some problems about using web based data entry system. Even though it is good to get data on real time but it is rather difficult to manage because the internet system and local network of the participate institutes were attacked by virus computer several times. And some research assistants are not familiar to computer program. After first phase of study, the data entry will be changed to sending case record form to the center fordata entering instead of using web base system.
