ITHAnet is a new powerful Internet communication site for the whole thalassaemia family – researchers, clinicians, paramedics, patients, families and friends. The project was funded through the EU’s FP6 research framework programme until 2008.
Research in thalassaemia is now becoming a multinational, multi-centre affair. If progress is to made, large numbers of cases are needed and experience must be shared by scientists from all over the world. The Ithanet project, supported by European funding from FP6 and ICT, has created an Internet portal using infrastructures and tools now available through the European and international e-health networks – such as video-conferencing, Grid networking and e-learning courses. The purpose of Ithanet is to provide researchers with a means for rapid communication and data exchange, but also to supply guidelines, protocols and databases to facilitate the research process.
The benefits of international networking are illustrated by projects in which Ithanet partners from different locations participated according to their interests. Data were collected from each participant and a final result prepared, which was presented at the Ithanet Scientific workshop in Singapore in October 2008. Some of these are now ready for publication while others have already been published. Examples include “Nephrolithiasis in Thalassaemia” and “Osteoporosis”, for which data was collected from 251 cases form Greece, Turkey, Lebanon, Egypt, Malta and Cyprus, and “the heterogeneity of HbH disease in the Mediterranean area” to which 344 cases were contributed by Sardinia, Greece, Cyprus and Spain.
The Ithanet consortium has also initiated the production of protocols, including clinical standards, for use in the regular follow-up and management of patients with significant thalassaemia syndromes which include transfusion-dependent thalassaemia major, thalassaemia intermedia, and HbH disease. Aspects of sickle cell disease are also covered. Protocols were also developed to indicate questions in thalassaemia care that require further research, since clinical guidelines for the care of patients already exist. Careful study of these published guidelines reveals that there are many gaps in evidence-based knowledge, so the guidelines are posted as subjects for discussion rather than final suggestions and of necessity will include investigations, treatment modalities and procedures which are experimental and not available to all centres in all countries.
Although EU funding is coming to an end, the Ithanet consortium is proposing to continue the Ithanet portal and all its services for the benefit of the global thalassaemia community. TIF hopes this most useful project will be successful in attracting sufficient funding to continue its work. Eventually, ITHAnet may become a permanent global communications network that will not only facilitate research, but also disseminate knowledge and understanding concerning best practices in thalassaemia management.
Visit the Ithanet website: www.ithanet.eu
Visit the Ithanet web portal: portal.ithanet.eu
