Observational studyBMJ open2020
Observational study on the current status of thalassaemia in Malaysia: a report from the Malaysian Thalassaemia Registry.
Observational study in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers.
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Who cites it
29 citing papers in PubMed.
- Randomized double-blind crossover trial of a transdermal maltose dissolvable microneedle patch for topical anesthesia before intravenous cannulation for thalassemia children.Scientific reports · 2025Trial
- The effectiveness of a theory-based intervention program for pregnant women with anemia: A randomized control trial.PloS one · 2022Trial
- A Scoring System for the Assessment of Quality of Care in the Management of Transfusion Dependent Thalassemia.Hematology reports · 2026Review
- G6PD variants but not Filipino beta-thalassemia are associated with reduced risk of Plasmodium knowlesi infection in Sabah, Malaysia.Malaria journal · 2026Article
- The nationwide prevalence of anaemia and the associated factors in the general adult population in Malaysia.BMC public health · 2026Article
- Experiences and insights of thalassaemia carriers from an indigenous community in Sabah, Malaysia.Journal of community genetics · 2025Article
- Molecular spectrum and carrier frequency of deletional hereditary persistence of fetal hemoglobin and delta-beta thalassemia in Malaysia.Blood research · 2025Article
- Novel HBB:c.375_376delAC mutation in a Malay patient with HbE beta-thalassemia intermedia: A case report.Medicine · 2025Article
- Survival and causes of death in patients with alpha and beta-thalassemia in Northern Thailand.Annals of medicine · 2024Article
- Global Globin Network and adopting genomic variant database requirements for thalassemia.Database : the journal of biological databases and curation · 2024Article
- Detection of Hemoglobin Constant Spring by Capillary Electrophoresis and High-performance Liquid Chromatography: A Study in Kelantan, Malay.Oman medical journal · 2024Article
- Polypharmacy and medication regimen complexity in transfusion-dependent thalassaemia patients: a cross- sectional study.International journal of clinical pharmacy · 2024Observational
- Rare coinheritance of hemoglobin vancleave with severe beta-thalassemia mutation in a patient with secondary erythrocytosis.Human genome variation · 2024Article
- Article
- The Characteristics of Compound Heterozygosity for Hemoglobin G-Makassar with Hb E in Malaysia.Journal of blood medicine · 2024Article
- Clinical and haematological characteristics of 38 individuals with Hb G-Makassar in Malaysia.EJHaem · 2023Article
- Characterization of New Alpha Zero (αDiagnostics (Basel, Switzerland) · 2023Article
- Adolescents' experiences and views of the national school-based thalassaemia screening programme in Malaysia: a qualitative study.Journal of community genetics · 2023Article
- Life satisfaction and difficulties experienced by the family members of individuals with thalassemia.Nursing open · 2023Article
- Gene Mutation Spectrum among Alpha-Thalassaemia Patients in Northeast Peninsular Malaysia.Diagnostics (Basel, Switzerland) · 2023Article
Corrections and comments
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Authors and funding
17 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThalassaemia is the most common inherited blood disorder in Malaysia. This study aims to report the current status of thalassaemia in Malaysia and provide a comprehensive understanding of the disease through data obtained from the Malaysian Thalassaemia Registry.
designData were extracted from the Malaysian Thalassaemia Registry, a web-based system accessible to enrolled users through www.mytalasemia.net.my.
settingThe Malaysian Thalassaemia Registry data was recorded from reports obtained from 110 participating government and university hospitals in Malaysia.
participantsThe patients were those attending the 110 participating hospitals for thalassaemia treatment.
interventionData were collected from the Malaysian Thalassaemia Registry from 2007 until the fourth quarter of 2018. PRIMARY OUTCOME MEASURE: 7984 out of 8681 patients with thalassaemia registered in the Malaysian Thalassaemia Registry were reported alive.
resultsMajority of the patients were reported in the state of Sabah (22.72%); the largest age group affected was 5.0-24.9 years old (64.45%); the largest ethnic group involved was Malay (63.95%); and the major diagnosis was haemoglobin E/β-thalassaemia (34.37%). From the 7984 patients, 56.73% were on regular blood transfusions and 61.72% were on chelation therapy. A small fraction (14.23%) has undergone splenectomy, while the percentage of patients with severe iron overload (serum ferritin ≥5000 µg/L) reduced over time. However, cardiac complications are still the main cause of death in patients with thalassaemia.
conclusionData gathered into the registry can be used to understand the progression of the disorder, to monitor iron overload management and to improve the outcomes of treatment, to enhance preventive strategies, reduce healthcare burden and improve the quality of life. Sustainability of the Malaysian Thalassaemia Registry is important for surveillance of thalassaemia management in the country and help the national health authorities to develop more effective policies.
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