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Electronic Infrastructure for Thalassaemia Research Network (ITHANET)

Published on: 14/01/2010
Document

ITHANET is a Euro-Mediterranean network of research centres conducting molecular and clinical research of thalassaemia and related haemoglobinopathies.

Participants of ITHANET include all major European research institutions active in haemoglobinopathy research and a number of collaborating partner institutions from non-EU Mediterranean and Black-Sea countries.

The main goal of ITHANET Coordination Action is to enhance the scientific potential of this research community using infrastructures and tools of European Research Networks. ITHANET aims to harmonise and develop these resources for the coordination of existing research activities as a base for future collaborative projects. Using eInfrastructure tools to consolidate and strengthen a research community with a specific geographic distribution and research topic, ITHANET strives to create new opportunities for high-impact collaborative research in the European Research Area.Project Objectives:

The specific objectives of ITHANET are:

  • to stimulate the development of common research strategies and pooled resources in the field of haemoglobinopathy research, based on the efficient and effective use of electronic research infrastructures (research networks, grids).
  • To create an inclusive research environment and provide access to pertaining research resources.
  • To promote the efficient dissemination of research results in the field of haemoglobinopathies and provide support to improving quality and availability of health care services offered to the European population.

ITHANET will set up a common information and communication environment in order to facilitate and provide support for common and collaborative research activities, exchange of data, protocols, research results, and their effective exploitation.The specific actions of ITHANET are focussed on:

  • Introduction of media broadcasting and streaming technologies into conferences and teaching courses on haemoglobinopathies.
  • Implementation of a European portal for thalassaemia and associated haemoglobinopathies, targeting researchers, specialist doctors, and the general public.
  • Creation of a common publication scheme for haemoglobinopathy case reports, that will prepare the ground for a new e-journal of thalassaemia case reports.
  • Creation of repositories of methods, protocols and data descriptions that will initiate the pooling of data and further resources relevant for studies relating genotypes to thalassaemia phenotypes.
  • Setup of a database of genetic mutations associated with thalassaemia and related haemoglobinopathies, linked with geographical information on specific mutations.

Policy Context

The promotion of eLearning and eHealth infrastructures are a priority in an increasingly decentralized and collaborative research and clinical environment. The provision of related tools and raising awareness of their existence and utility to professional and general members of a disease community (in this case: thalassaemia) are major steps towards a comprehensive information society and towards an optimised use of existing knowledge and of the finite resources available for disease research and management

Description of the way to implement the initiative

The project was coordinated centrally by the lead partner, with direct reference to work package leaders, by e-mail, telephone calls, videoconferencing and announcements on the project and portal web sites. Particularly, activities were coordinated and files exchanged through a dedicated project web site and the main dissemination tool of the project, the ITHANET Portal, at later stages of the project served the coordination of actions and the internal discussion of consortium topics in its Forums section.

The project incorporated multiple workshops on eInfrastructure and specifically grid-related tools. To promote take up of eLearning approaches, three dedicated hybrid courses on community-specific topics were organized and provided by live streaming and streaming on request

Technology solution

The ITHANET Portal resides on http://www.ithanet.eu, where information is accessible using a standard web browser through a single web site. The site structure is user friendly with a single top menu bar and drop down menu as the main means of navigation, besides additional search and navigation options. The top-level contents organisation includes direct access to the Home, News, Events, Forums, Organisations, Featured Items, Databases and Newsletter subpages. Updates of the portal contents are announced using e-mail alerts for registered users, and a newsletter is circulated every four months.

For virtual real-time communication, two systems were implemented sequentially: the first for secure communication using a package of open-source eInfrastructure tools (ITHANET eInfrastructure Tools), and the second for simpler and more user-friendly communication via Adobe Connect.

In case of ITHANET eInfrastructure Tools, the end-user tools comprises the AccessGrid tools VIC and RAT for video and audio communication, respectively, and a web browser for real-time text-based chat. Secure network layer access is provided by OpenVPN, where the client uses a Grid-compliant X.509 certificate as proof of identity. The central service is a modular programmable UDP packet reflector that provides multi-point data distribution among the participants and central monitoring and logging features. Another central service is a chat server.

The client side of the Adobe Connect system is a Flash-based application that provides audio and video communication, and a host of other features, such as text chat, persistent file sharing, whiteboard sharing, application sharing including remote control of applications, discussing notes, and opinion polls. It can be used as a standalone application with Shibboleth-based authentication, or it can be accessed using OpenVPN with authentication based on Grid-compliant X.509 certificates. The central service is the Adobe Connect server, which has been licensed by the WP2 lead partner.

Technology choice: Standards-based technology

Main results, benefits and impacts

As a result of the FP6 ITHANET project, patients will find background knowledge on haemoglobinopathies and a resource for the identification of thalassaemia centres. Moreover, they will benefit from more effective drugs owing to accelerated multi-centre research, with the use of shared databases and support for collaborative tools and large-scale computing infrastructures. Overall, the project will allow better treatment results, because of optimised treatment regimens, and through the exchange of methods and improved screening programmes, including population screening, gene counselling and prenatal diagnosis, will decrease the number of those in need of care and free up resources for disease prevention.

The benefits of the ITHANET Portal and videoconferencing also include ease of access of clinicians or researchers to the specialist knowledge and expertise of other thalassaemia centres, so as to solve difficult diagnostic cases or seek advice on appropriate diagnostic tests for non-standard thalassaemia cases. The clinicians have access to continued education and the latest research results by means of eLearning. This approach also allows the EU to support physicians from third-world areas affected by thalassaemia and other haemoglobinopathies. In the same vein, the project will facilitate individualised healthcare and prognosis, owing to extended records on phenotype-genotype correlations and integrated databases as tools for specialist counselling.

Benefits to medical and pharmaceutical researchers include access to grid infrastructure to conduct complex research tasks, including CPU-intensive tasks and tasks that require working with large medical data sets in a distributed multi-centre environment. Further benefits are videoconferencing to support communication among the distributed research teams and efficient continued education as well as distribution of recent research results by the means of eLearning.

In summary, improved education, diagnosis and early care (including preventive measures, such as screening) will result in decreased burden on the health system involved, owing to lower number of patients suffering from β-thalassaemia major.

Lessons learnt

The ITHANET consortium, comprising many partners with different specialisations, has been an incentive for partners to upgrade their network connectivity and their conception of eInfrastructure tools and the benefits these offer in everyday medical, research, and diagnostic work.

On the flipside of this positive development is the understanding that the heterogeneity of the consortium and the in part low level of understanding of eInfrastructure concepts has slowed down the achievement of some of the project goals and the initial take up of specific tools. Particularly, it is complex to design application-neutral distributed computing, storage, and communication environments that also provide application-specific support. The pilot projects from the β-thalassaemia community will provide better understanding of user needs, optimisation and integration of infrastructures, such as grids and videoconferencing tools, for healthcare application groups.

Engagement of a wider community is a necessity, and additional functionality envisaged for the ITHANET Portal, such as the implementation of its text content in wiki (user-editable) form, international language support for interactive contents, and upgrades to its haemoglobin database might facilitate this.

Scope: International