ArticleIntractable & rare diseases research2024
The epidemiology and healthcare burden of rare diseases requiring hospitalisation among adult patients in Langkawi, Malaysia: Insights from a pilot study.
Article in Intractable & rare diseases research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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1 citing paper in PubMed.
- The long road to a rare diagnosis: A Malaysian case of childhood-onset progressive myoclonus, ataxia, and retinal dystrophy with biopsy features suggestive of mitochondrial dysfunction.The Journal of international medical research · 2026Article
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4 authors.
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Abstract
In Malaysia, rare diseases affect fewer than 1 in 4,000 people. As of 2020, 491 rare diseases have been recorded in Malaysia, but with limited epidemiological data. As the first study in Malaysia, this retrospective cohort study examined the epidemiology and admission-related healthcare costs for adult rare disease patients in Langkawi. Among the 38 patients, rheumatological rare diseases topped the list (39.5%). The annual admission rate for rare diseases was 0.9%. Langkawi patients had lengthy hospital stays (9.7 days) and a 7.9% mortality rate. 23.7% of patients defaulted to follow-up, and 7.9% were referred to a tertiary hospital due to inadequate equipment or speciality care. Admission costs were Malaysian Ringgits (MYR) 244,598.63 (~US Dollars (USD) 51,280), with 80.2% from medication. The average healthcare resource utilisation was MYR 6,436.81/ patient/year (~USD 1,350/patient/year).
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