The main objectives of the MINE (Mesothelioma Information Network in Europe) proposal are: to contribute to the advancement of current knowledge and to the harmonization of diagnostic and therapeutic processes for Malignant Pleural Mesothelioma (MPM) and also to increase awareness of risks in target populations, in particular regarding non-occupational exposure.
The project MINE aims at facilitating the interconnection between advocacy groups, primary care physicians and referral centers to optimize the management of this disease. The objective will be reached through realization of a European network of centers that will actively contribute to investigate and survey current status of research and treatment, and to harmonize and develop diagnostic and therapeutic guidelines on MPM. It will also contribute to the preparation of informative and educational resources regarding risks, prevention and support to interested groups of exposed and families, in cooperation with advocacy groups.
The EU made a definite health oriented investment deciding to stop use of asbestos. However, the asbestos legacy takes long time to disappear because of both biology (the long latency of asbestos related cancers) and presence of large amounts of asbestos materials. About 10.000 MPM cases per year are expected in EU in the forthcoming decennium. Malignant Mesothelioma (MM) is a highly aggressive tumor and a very sensitive health care issue. It is rare (incidence in EU countries 15 - 33 cases/million-year) but occurrence is not uniform, being associated with asbestos exposure. Up to 90% of MM affect the pleura (MPM). Despite asbestos ban in Europe, incidence will increase for the next 10 years, because of the 30 - 40 year latency of the disease. Although MM is prevalently occupational, over 10% of cases (mostly MPM) are associated to non occupational exposure (i.e. households, domestic use and environmental or neighborhood exposures). Information should be widespread and targeted to a wide population of subjects at risk (1.2 million for occupational, unknown for non occupational) in the different EU countries. National governments addressed asbestos control with large discrepancies in Western EU and, more dramatically, in Eastern EU. The clinical management of MPM is complex and usually multidisciplinary. Medical related challenges include early diagnosis, clinical expertise and effective therapy. Current therapy is unsuccessful: limiting factors in research include the very limited number of dedicated clinical trials and the nature of rare disease. Further limits are the few dedicated cancer registries and tissue banks. Cost per case was estimated as € 15,000 in Scotland and € 24,000 in Italy. For the above-mentioned reasons and in particular the well known association with asbestos, MM is unique and there are unmet needs at several levels (societal, primary care physicians, hospital clinicians) which are not covered by other networks (e.g. www.rarecare.eu) or ongoing EU initiatives, therefore the establishment of a dedicated information network is strongly advised.
The development and dissemination of scientific based practices (according to the guidelines that will be produced by MINE) and the aggregation of diagnostic and treatment capacity in the clinical centers network will determine scale economies as well as more appropriate medical practices for MPM.
Through tailored surveys dedicated to target groups (population at risk in selected areas chosen on the basis of epidemiological evidence; primary care physicians in the same areas; and clinicians working in the more important institutions for MM treatment) we will systematically collect information about risk perception, diagnostic work flow and treatment attitudes and, subsequently, information material and guidelines will be generated.
A systematic mapping of the existing biological tissue banks and an analysis of existing MM registries and of local/national database collections and of the interaction with tissue banks will be carried on, with the purpose of improving and harmonizing those activities.
To optimize the communication, we will generate an interactive website. The website will be adequately advertized. The press offices of the consortium institutions will cooperate.
The EU dimension of the MINE network potentially contribute to mitigate cross border variation in risk awareness and in therapeutic options, therefore reducing casual and inefficient movement of uninformed MPM patients in search of appropriate therapy. The MINE project through the planned activities will boost the level of awareness about risks associated to several types (occupational, non occupational) of asbestos exposure and will improve knowledge of the MM patients regarding the opportunities about optimal diagnostic and therapeutic strategies as well as availability of innovative clinical studies. Advocacy groups in the participating countries will contribute to MINE, in particular to the actions regarding patients and exposed awareness. The changes expected to occur as result of the MINE project will involve both the scientific community and the asbestos exposed population, with specific outcomes for each target group.
The planned interaction between Western and Eastern EU countries is expected to reduce the gap among borders and for this purpose a special focus will be concentrated on Eastern Europe with a dedicated WP and a planned workshop to be organized in cooperation with specific scientific organizations.