Ithanet (the electronic infrastructure for thalassaemia research network)
is a new project within the 6th Framework Programme for Research and
Technological Development of the European Union. Its goal is to strengthen the
Euromediterranean community of researchers in molecular and clinical research into
thalassaemia and related haemoglobinopathies, and enhance its scientific potential
using the existing and emerging eInfrastructure tools (GÉANT2, Grids).
Haemoglobinopathies, such as sickle-cell anaemia and the thalassaemias, are
potentially life-threatening genetic disorders. Globally, 250 million people are carriers of
a potentially pathogenic gene, and annually 300,000 infants are born with a major
haemoglobinopathy. Concrete challenges lie in the prevention of the disease, in the
symptomatic therapy of affected individuals, and in the development of a cure for
haemoglobinopathies. To meet these challenges, 25 partners, comprising international patient organisations
and Euromediterranean research centres from 16 countries, united in April 2006 for a
time frame of two years to form the Ithanet project.
Ithanet aims at
harmonising and developing its resources, such as comprehensive databases, research
experience and clinical expertise, and make them accessible for the coordination of
existing activities and as a basis for collaborative projects. To this end Ithanet will set
up a common information and communication environment, including teleconferences
and webcasts on haemoglobinopathies, a common publication scheme for
haemoglobinopathy case reports and implementation of an open European web portal
as a repository of methods, protocols and data to exchange information on
haemoglobinopathies, and to foster research coordination in the area.
At present the development of international databases and therapy approaches still has
vast scope for improvement. It can be predicted that progress in these areas will greatly
benefit from a coordination and integration of the international research effort by
Ithanet.
The total grant for the project is approximately €1.2million, which is co-funded by the
European Commission and the partners.