ACTION UNDER THE SECOND OBJECTIVE "PROMOTE HEALTH"
PREVENTION OF MAJOR AND RARE DISEASES
The ultimate purpose of the MINE proposal is:
- to contribute to the advancement of current knowledge and to the harmonization of diagnostic and therapeutic processes for MPM and
- to increase awareness of risks in target populations, in particular regarding non-occupational exposure.
MINE aims at facilitating the interconnection between advocacy groups, primary care physicians and referral centers to optimize the management of this disease.
The proposed strategy towards the general objective, given the time and available resources, is the realization of a European network of MPM centers that will actively contribute to investigate and survey current status of research and treatment, and to harmonize and develop diagnostic and therapeutic guidelines. 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 advancement of current knowledge and the harmonization of diagnostic and therapeutic processes for MPM will be pursued along three lines: update and dissemination of guidelines, information and facilitation of the participation in clinical trials, and availability of biological material for preclinical research for MM in Europe. The strategy includes epidemiology, analysis and coordination of existing databases and tissue and biological fluid banks, as well as promotion of new ones through the implementation of existing models. All activities will begin with an updated information on current status of activity and resources, aimed to provide an overview of the different EU countries.
The objective regarding the increase of awareness will be targeted designing information tools to be implemented under different media including, but not limited to, a dedicated web site for general use, information booklets, press conferences in each of the participating EU countries and periodical articles on newspapers and magazines.
1. To provide information on the diagnostic and therapeutic protocols that are currently used and their variation in Europe and quantify the participation to clinical trials
2. To produce and disseminate through website and scientific journals the state of the art guidelines for MPM diagnosis and therapy
3. To promote the development and harmonization of MM registries and cooperation with clinical centres, for providing homogeneous statistics. Increase the coverage of MM registries. Estimate proportion of cases in clinical trials and tissue banks
4. To promote the development and harmonization of tissue banks with the production of specific guidelines. Increase the proportion of cases in MM tissue banks. Estimate proportion of cases in tissue banks
5. To prepare the information section of the website, enduring and audiovisual materials (in different languages and one educational event for the harmonization of awareness over EU. Survey of current practice for early diagnosis of MPM
6. To identify the major needs for an homogeneous development of clinical and epidemiological resources on MM in Eastern Europe, for asbestos exposed awareness and to propose solutions for future interventions
The methods and means that will be employed by the project to carry on the objectives are:
Methods: Survey of diagnostic and therapeutic procedures in selected hospitals on clinical, radiological and pathological procedures for MPM, and levels of confidence in the diagnosis needed for the purposes of treatment, reporting, and compensation. Additional items will include number of MPM treated per year, percentage in clinical trials and treated according to international protocols. Evidence based guidelines on diagnosis and therapy of MPM, that will be prepared following state of the art methodology (www.cochrane.org). Analysis of existing MM registries and of local database collections and of their interaction with tissue banks. Epidemiological data on incidence and prevalence changes and trends will be considered. Calculation of the number of MM cases from clinical data bases and from tissue banks and comparison with figures estimated by tumor registries. Estimations of the proportion of cases compensated, according to national rules. In each EU country, a systematic mapping of the existing biological tissue banks for MM will be pursued with a survey of pathology units, through the European Society of Pathology Pilot survey in some selected areas (see target groups) on the level of risk perception and subsequently, with psychologists with specific expertise, we will generate leaflets, booklets, and audiovisual materials to be posted on the website and made available at large. Informative material will be disseminated through primary care physicians associations and advocacy groups to target groups subjects (exposed and primary care physicians) in selected areas of high relevance (e.g. around asbestos cement factories). Specific information material will be prepared also for the hospital staff, in order to coordinate information given to patients and caregivers. We will take care to transfer scientific updated information and guidelines into user-friendly educational material, translated in national languages.
Means: The central tool in order to maximize communication is an interactive website, translated in national languages, adequately advertized, that will be generated and periodically updated. For the survey: hospital staff interview. For the guidelines: systematic revision and graduation of evidence and of strength of recommendation. A data base including individual information on cases will be designed as a pilot implementation in the participating centers. Data collection through database from tumor registries biobanks and hospital staff; analysis of incidence data and of compensation boards data. Informative and educational tools such as leaflets and booklet. Cooperation with advocacy groups and medical scientific societies. Publications on scientific journals, newspapers and magazines. Use of social media networks (Twitter and Facebook).
To contribute to the preparation of:
- INFORMATIVE AND EDUCATIONAL RESOURCES:
- PREVENTION SUPPORT TO INTERESTED EXPOSED SUBJECTS AND FAMILIES
MINE network targets will be represented by the:
- 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.
In consideration of the limited resources, the targeting action will be carried on through the offer of informative and supportive documentation to intermediate players, such as the dedicated advocacy groups. Exposed, patients and primary care physicians will be reached through existing associations (e.g. AFEVA or others) or medical associations. We aim to reach a large fraction of the inhabitants and physicians in high risk areas with informative material and local actions on asbestos and on early diagnosis of asbestos related diseases. A pilot action will regard the areas at highest incidence of MPM because of asbestos cement production. In Italy such areas in Piedmont and Lombardy involve a total of 200.000 inhabitants, mostly highly aware of the asbestos exposure associated risks. Similar areas in other countries will be identified by the MINE program.
With regard to the hospital medical community, the project aims at establishing an information network on MM on diagnostic and therapeutic activity, guidelines, registration of cases, collection of clinical information and tissue banking. A section will be dedicated in the website and this activity will be piloted at selected referral hospitals.
The expected outcomes will involve both the scientific community and the asbestos exposed population, with specific outcomes for each target group.
In general, there will be a change in the level of awareness about risks associated to several types (occupational, non occupational) of asbestos exposure and a better knowledge for the MM patients of the opportunities about optimal diagnostic and therapeutic strategies as well as availability of innovative clinical studies.
We expect to reduce the gap between Eastern and Western countries and for this purpose a special focus will be concentrated on Eastern Europe with a dedicated workshop that will be organized in cooperation with specific scientific organization such as International Mesothelioma Interest Group.
For the medical and scientific community, the main expected outcomes are:
1. Improved and harmonized practices on MPM diagnosis and treatment, according to updated, evidence based guidelines that will be produced within the project.
2. Availability of large scale homogeneous and harmonized data on clinical and exposure characteristics, on treatment and follow-up, and on the availability of biological samples, collected through a common database. Data will be contributed by MINE participating centers and other centers, as a transnational European network. The data base will start as a pilot during the project and will remain as a resource for future use and extension, for the facilitation of common studies, both clinical and pre-clinical.
3. Increased proportion of MPM patients included in international clinical trials on MPM therapy, through the increased participation of individual centers and the increased number of trials.
4. On the pre-clinical side, the availability of biological tissue from different areas will allow comparative analyses of MPM cases, in order to trace peculiar molecular and genetic profiles that can drive the development of novel and more effective treatments.
For the asbestos exposed population, the main expected outcome is an increase in the awareness on asbestos risk and on related disease burden.
We also expect a picture of the variation the social and health-related impact of asbestos-related disease in both high risk areas and affected communities (either resulting from environmental exposure or from asbestos factory workers and their relatives). It is likely that perception and attitudes towards asbestos related risks are different among the EU countries and the present study will contribute to measuring the differences with the ultimate aim of increasing harmonization of national practices.