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Thalassaemia specific electronic patients’ records

A pilot study at the Nicosia Thalassaemia Centre has been finalised, with the uploading of data relating to 390 patients with β-thalassaemia major. The results of the data analysis were presented at a workshop held on 20 October 2011 in Cyprus. This project has allowed TIF to validate the value of such ...

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Epidemiology data bank on haemoglobin disorders

The epidemiology project of TIF focuses on the collection of information on carrier rates, anticipated births and current status of haemoglobinopathy control strategies within health systems in the different country members of TIF, for β- and α-thalassaemiaσ, HbE and Sickle Cell Disease (SCD), and combinations constitute the main focus of ...

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Haemoglobinopathy Reference Centres

This is one of TIF’s new projects undertaken for the year 2013 and its goal is to develop a database for Haemoglobinopathy reference centres across the world, mapping the services they provide to patients. This is an extension to the information compiled by ENERCA-3 project and the deliberation of EUCERD, ...

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Telemedicine

This project focused on building confidence increasing acceptance of telemedicine solutions amongst patients and health professionals. The official launch of Chain of Trust took place in Brussels, in which TIF participated. The project has two core Work Packages, focused on the following objectives: to improve available knowledge of the specific ...

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European Network for Rare Anaemias

TIF has played a leading role as a partner in the European Commission-funded project ENERCA (European Network for Rare and Congenital Anaemias). The project aims to bring experts together to improve public health services in the field of rare anaemias and, more particularly, to identify criteria and support national and ...

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European Patients’ Academy on Therapeutic Innovation

TIF has engaged in a project with EFGCP’s, the EU-funded European Patients’ Academy on Therapeutic Innovation’ (EUPATI). This is a patient-led academy, which will develop educational material, training courses and a public Internet library to educate patient representatives and the general public about all processes involved in medicines development. Topics ...

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Electronic Infrastructure for Thalassaemia Research Network

The ITHANET portal is a community website dedicated to thalassaemia and other haemoglobinopathies, offering a range of services including continuous updates on the upcoming conferences, interesting recent publications and talks. It also incorporates a database of organizations and networks concerned with haemoglobinopathies world-wide, and a wiki-based text interface to establish ...

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Magnetic Resonance Imaging (MRI)

Clinical care in thalassaemia major has improved dramatically over the last three decades, resulting in an impressive increase in survival rates and quality of life of patients living in countries where such clinical care is both available and affordable. However, cardiac disease still constitutes one of the most frequent and ...

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DOMAINE

DOMAINE is a European project that aims to create a safe and sufficient blood supply, by comparing and recommending good donor management practice. From 2008 to 2011, the DOMAINE project worked on improving donor management practices throughout Europe. The two main project outcomes are the Donor Management Manual and the ...

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