	User ID
	Password

Remember Me

THALASSAEMIA

Thalassaemia is a hereditary blood disorder and it is estimated that about 5 percent of the Malaysian population are carriers. Couples who are both carriers have a high probability of getting a child with thalassaemia i.e. 25% with every pregnancy. Public education and awareness campaign will therefore enable couples to make an informed choice and prevent the birth of a child with thalassaemia. A thalassaemia patient requires regular blood transfusion to replace damaged blood cells. The repeated transfusion causes iron built-up in the body that endangers the patient. It has to be removed at regular intervals via a treatment called iron chelation. Currently, the most effective method is the use of desferal injections over 8 - 10 hours every day for 5 or 6 times a week. This is done by the patients themselves at home.

MyTALASEMIA

MyTalasemia is a vortal that takes a holistic approach in its implementation. Curbing and managing thalassaemia requires action by all stakeholders including patients, medical professionals, the public and the government.

We recognise that thalassaemia treatment can be a nightmare to children. MyTalasemia encourages patients to actively participate in self-evaluation of their individual treatment progress. This can be done by patients sending his or her treatment compliance rating using mobile phones or through the internet. In return patients will receive their health data for them to self-analyse and using it as an evaluation tool to improve their medication compliance. In addition, parents as active partners in their child’s health are empowered with enriched health information available on-line and can offer an explanation on the impact of treatment compliance on outcome and rewarding their children for their effort.

Medical professionals can benefit from the digital library apart from sharing information amongst them. MyTalasemia has a realtime Survival Analysis and Treatment Analysis to aid the effectiveness of the various treatment options.

With the inclusion of The Malaysian Thalassaemia Registry, the most current information on the disease burden status can be assessed realtime. Patients are also able to provide information for their family members to come forward for thalassaemia screening.

Members of the public wishing to undergo thalassaemia screening can get information on the whereabouts of the nearest government facility available. Selected health clinics and hospitals throughout Malaysia are being equipped with haematology analysers for screening purposes.

Traditionally survival analysis is done by exporting data from the registry to a statistical package. With large amount of data such as national registry of patients, it is impractical to export all the data for analysis.

Traditional method involves a lot of manual processes and is inefficient. It also requires someone knowledgeable to run the statistical package.

MyTalasemia provides a real time survival analysis at the click of a button and is capable of analyzing huge amount of patient data without the need to export the data to another package.

MyTalasemia contains registry for patients throughout Malaysia. In addition to the list of patients, other information such as clinical, treatment and complications are also stored.

Together this will provide a better picture of the patients’ treatment progress. Monitoring for potential complications before it occur will ensure optimal patient care and the adoption of early remedial intervention.
Thalassaemia patients are normally diagnosed within 6 months of age. This gives MyTalasemia the opportunity to record medical data for the life time of the patient.
The registry enables the distribution of thalassaemia patients in Malaysia to be computed and displayed on spatial mapping. This will allow the government to concentrate its information and education campaign in areas of high patient occurrence.