WBDR first step towards haemophilia registry

The Health Ministry is studying the use of World Bleeding Disorder Registry (WBDR) which is handled by the World Federation of Haemophilia as a starting point towards creating a haemophilia registry in Malaysia, said Health Minister Datuk Seri Dr Dzulkefly Ahmad.

“WBDR is a free registry for all medical practitioners world wide who are involved in treating haemophilia patients.

“However issues with regards to patients’ data security and the need for a registry needs to be scrutinised based on the Guidelines on Patient Registry Establishment and Implementation that is published by the National Institute of Health,” he said.

He said this in his written reply to Lee Chuan How (PH-Ipoh Timor) who asked on the improvements that needs to be made in ensuring that haemophilia patients are registered in the Health Ministry’s database to assist in the patient monitoring and welfare.

Dzulkefly also clarified that to date there are specific registry or database for haemophilia patients.

Haemophilia is a rare blood condition that affects blood’s ability to clot.

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