Global globin network consensus paper: classification and stratified roadmaps for improved thalassaemia care and prevention in 32 countries

BH Halim-Fikri, CW Lederer, AA Baig… - Journal of Personalized …, 2022 - mdpi.com
The Global Globin Network (GGN) is a project-wide initiative of the Human Variome/Global
Variome Project (HVP) focusing on haemoglobinopathies to build the capacity for genomic …

Thalassaemia registries: a call for action. A position statement from the Thalassaemia International Federation

D Farmakis, M Angastiniotis, MM El Ghoul, L Cannon… - …, 2022 - Taylor & Francis
Disease registries can be extremely powerful evidence generating tools while providing a
central meeting point for all implicated stakeholders, facilitating their networking and …

The outcomes of patients with haemoglobin disorders in Cyprus: A joined report of the Thalassaemia International Federation and the Nicosia and Paphos …

M Angastiniotis, S Christou, A Kolnakou… - Thalassemia …, 2022 - mdpi.com
Haemoglobinopathies, including thalassaemias and sickle-cell syndromes, are demanding,
lifelong conditions that pose a significant burden to patients, families, and healthcare …

Global, regional, and national burden of thalassemia, 1990–2021: a systematic analysis for the global burden of disease study 2021

Y Tuo, Y Li, Y Li, J Ma, X Yang, S Wu, J Jin, Z He - Eclinicalmedicine, 2024 - thelancet.com
Background Anemia is a significant contributor to the global disease burden, of which
thalassemia is the most common hereditary anaemic disease. Previous estimates were …

Hemoglobin disorders in Europe: a systematic effort of identifying and addressing unmet needs and challenges by the Thalassemia International Federation

M Angastiniotis, L Cannon, E Antoniou, AL Brunetta… - Thalassemia …, 2021 - mdpi.com
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 …

An electronic infrastructure for research and treatment of the thalassemias and other hemoglobinopathies: the Euro-mediterranean ITHANET project

CW Lederer, AN Basak, Y Aydinok, S Christou… - …, 2009 - Taylor & Francis
Hemoglobin (Hb) disorders are common, potentially lethal monogenic diseases, posing a
global health challenge. With worldwide migration and intermixing of carriers, demanding …

Addressing Thalassaemia Management from Patients' Perspectives: An International Collaborative Assessment

EC Economidou, M Angastiniotis, D Avraam… - Medicina, 2024 - mdpi.com
Background and Objectives: The effective management of chronic diseases, particularly
hereditary and rare diseases and thalassaemia, is an important indicator of the quality of …

[PDF][PDF] Global epidemiology of haemoglobin disorders and derived service indicators

B Modell, M Darlison - Bulletin of the World Health …, 2008 - SciELO Public Health
To demonstrate a method for using genetic epidemiological data to assess the needs for
equitable and cost-effective services for the treatment and prevention of haemoglobin …

ITHANET: Information and database community portal for haemoglobinopathies

P Kountouris, C Stephanou, C Bento, P Fanis, J Elion… - bioRxiv, 2017 - biorxiv.org
Haemoglobinopathies are the commonest monogenic diseases, with millions of carriers and
patients worldwide. Online resources for haemoglobinopathies are largely divided into …

Regional desk review of haemoglobinopathies with an emphasis on thalassaemia and accessibility and availability of safe blood and blood products as per these …

M Jhalani - 2021 - digitalcommons.fiu.edu
Haemoglobinopathies are hereditary disorders affecting the structure, function or production
of haemoglobin (Hb) and are among the commonest of clinically significant monogenic …