Epidemiology
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Scientific Literature
Global, Regional, and National Burden of Thalassemia, 1990–2021: A Systematic Analysis for the Global Burden of Disease
Background: Anemia is a significant contributor to the global disease burden, of which thalassemia is the most common hereditary anaemic disease. Previous estimates were based on data that were geographically…
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Scientific Literature
Haemoglobinopathies and Other Rare Anemias in Spain: Ten Years of a Nationwide Registry (REHem-AR)
REHem-AR was created in 2013. The progressive implementation of neonatal screening for haemoglobinopathies in Spanish autonomous communities where the registry had not been implemented, as well as the addition of…
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Scientific Literature
Economic and Clinical Burden of Managing Transfusion-Dependent b-Thalassemia in the United States
Aims To describe clinical complications, treatment use, healthcare resource utilization (HCRU), and costs among patients with transfusion-dependent β-thalassemia (TDT) in the United States. Materials and methods Merative MarketScan Databases were…
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Scientific Literature
The Danish National Haemoglobinopathy Screening Programme: Report From 16 Years of Screening in a Low-prevalence, Non-endemic Region
The Danish national haemoglobinopathy screening programme seeks to determine parental haemoglobinopathy carrier state antenatally. In this retrospective register based study, we evaluated the 16-year trajectory of this programme, utilising the…
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Scientific Literature
Epidemiology of Clinically Significant Forms of alpha- and beta-Thalassemia: A Global Map of Evidence and Gaps
This systematic literature review assessed the global prevalence and birth prevalence of clinically significant forms of alpha- and beta-thalassemia. Embase, MEDLINE, and the Cochrane Library were searched for observational studies…
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Scientific Literature
Hemoglobin disorders in Europe: A Systematic Effort of Identifying and Addressing Unmet Needs and Challenges by the Thalassaemia International Federation
Hemoglobin disorders (thalassemia and sickle cell disease) are a group of hereditary anemias that today occur across the world. The recent population movement has led to a steady increase of…
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TIF News
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Member News
Malaysian Health Minister: The Country Needs More Geneticists to Detect Thalassaemia Early
Malaysia needs more geneticists in order to identify thalassaemia patients at an early stage, stated Health Minister Datuk Seri Dr Adham Baba, after launching the 2019 Malaysia Thalassaemia Registry (MTR)…
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Scientific Literature
The Changing Epidemiology of the Ageing Thalassaemia Populations: A Position Statement of the Thalassaemia International Federation
Therapeutic advances in β-thalassaemia have gradually lead to a significant improvement in prognosis over the past few decades. As a result, patients living in areas where disease-specific programmes offering access…
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Scientific Literature
Estimating the Birth Prevalence and Pregnancy Outcomes of Congenital Malformations Worldwide
Congenital anomaly registries have two main surveillance aims: firstly to define baseline epidemiology of important congenital anomalies to facilitate programme, policy and resource planning, and secondly to identify clusters of…
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