The team also set up the ITHANET Portal for the central collection of data and easier communication of breaking news and events about the disease, and that remains live today. The forums, in particular, were very popular and led to many fruitful exchanges about particular, or very rare, cases of the disease.

Finally, in a continuation of the ITHANET project, a wiki and database have been set up which, over time, will integrate all the data, terminology, protocols and guidelines to identify and treat particular instances of thalassaemias.

Accelerated learning

"We really learned a lot during the project," Lederer relates. "[One time] we got all the experts together to discuss the way forward, and talk quickly went from e-Infrastructure to all sorts of different research projects they could set up."

That sort of face-to-face exchange and networking is important, suggests Lederer, but it would not have been be possible without the the virtual interaction made possible by ITHANET, stimulating the use of available and emerging e-Infrastructure technologies.  The enthusiasm of the participants demonstrated that there is a need and a real value in providing exactly the kinds of infrastructure that ITHANET developed. It underlined the value of a 'networked expertise' paradigm, where the most learned in a particular topic hold a global conversation from wherever they are located in the world.

Pioneering and ambitious

The ITHANET project was a pioneering and ambitious attempt to put that paradigm into practical use for a relatively obscure disease in very challenging circumstances, where often the fundamental infrastructure and familiarity with technology is missing.

But its success demonstrated that these types of networks have enormous potential. ITHANET's work could be applied not only to any haemoglobinopathy, but to any disease. It is even a potential early start towards cheaper, very large-scale epidemiological studies.

Epidemiological studies are invaluable, but they are enormously expensive to run and require huge cohorts to reveal real trends. Ultimately, projects like ITHANET could be the precursor to population-wide epidemiological studies using digital patient records, case notes and research.

ITHANET developed and executed a very ambitious programme and learned many of the fundamental lessons. In the process, it offered a tantalising glimpse of a very compelling future.

The ITHANET project received funding from the Sixth Framework Programme for electronic infrastructure development and is presently maintained with funding from the Research Promotion Foundation of Cyprus.

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