Learn from Indonesian success with rare disease registry, govt told

 An activist says a hospital in Indonesia turned itself into a hub for rare diseases within two years despite problems such as limited access to genetic testing and shortages of trained personnel.

About 12,000 patients with illnesses from across nearly 500 types of rare diseases are currently receiving treatment at Malaysian hospitals. (Envato Elements pic)

PETALING JAYA:

An activist said the government should take inspiration from an Indonesian hospital when setting up a registry for rare diseases, as the two countries share similar challenges.

Saida Abu Bakar.

Saida Abu Bakar said the Dr Sardjito General Hospital in Yogyakarta is a national hub for rare diseases in Indonesia. The institution builds rare disease patient registries and manages the database via a dedicated unit, she said.

She said Indonesia and Malaysia faced similar problems such as fragmented data, limited access to genetic testing and shortages of trained personnel, among others.

Yet the hospital managed to become a hub despite such stumbling blocks, she said. “And they did it within two years,” said Saida, who heads the Dystrophic Epidermolysis Bullosa Research Association Malaysia.

Saida attributed the hospital’s success to collaboration among clinicians, researchers, hospitals, government agencies and patient organisations.

Indonesia’s Biomedical and Genome Science Initiative, or BGSi, has also provided infrastructure for more systematic rare disease data collection, she added.

Saida said the hospital’s feat was even more significant given that Indonesia has a population of over 280 million people.

“The Indonesian hospital’s experience is useful not as a model to copy, but as an example of how rare disease data, genomics, clinical care and patient advocacy can be integrated.”

In February, the Malaysian health ministry announced that it would establish a national rare disease registry under the national policy for rare diseases.

Health minister Dzulkefly Ahmad said his ministry would prioritise the registry’s development, ensure continuity of care from hospital to the community, and improve sustainable financing mechanisms for treatment.

Around 45 million people in Southeast Asia suffer from rare diseases. In Malaysia, approximately 12,000 patients across nearly 500 types of rare diseases are currently treated at hospitals.

Saida said delays in setting up a registry would prove costly, especially for patients. “Every year without comprehensive data raises the risk of leaving more patients undiagnosed, more families unsupported and more policy decisions made without a full picture of need,” she said.

“If Malaysia is serious about equitable healthcare, the registry must move from proposal to implementation with urgency.”

Dr Gunadi.

Dr Gunadi, the coordinator for the rare disease hub at the Dr Sardjito Hospital, said collaboration between clinicians, researchers, government, and related NGOs was essential in setting up a registry.

Clinicians furnish data, while researchers provide genomic and analytical expertise. The government ensures policy support and sustainability, while patient support groups promote awareness, and patient-centred priorities, he said.

“Without this multi-stakeholder collaboration, registries often remain incomplete or unsustainable,” Gunadi said.

He said Malaysia should prioritise several things in the setting up of a registry, including a clear governance framework, standardised terminology, and identify centres for data collection. - FMT