A central and most important goal of the network is to organize optimal management and therapy for all patients with mastocytosis.
To reach this goal, it is necessary to establish i) a European-wide network of Centers of Excellence and ii) at least one Reference Center for each ‘Competence-Issue’. A step-wise approach was selected to reach these objectives:
In a first step, a limited number of Centers of Excellence were defined together with Reference Centers for all Issues of Competence. Based on the availability of logistics and other required criteria to claim a center-status, various groups and scientists in Europe have been invited to join the ECNM as a Center of Excellence or/and a Reference Center. In each case, a center is i) first invited, ii) then evaluated for center-requirements, and iii) is then inaugurated and called an active center. The ultimate goal of the ECNM is to include one Center of Excellence in each European country, and at least 2 Centers of Excellence in all European countries in which the population exceeds 50 million people. There is no geographic requirement for the Reference Center type.
Standardization
Most important goals for the Reference Centers are to develop standards for diagnostic tests, clinical evaluations, and therapy, to organize standardization round circle studies, and to distribute established new standards to all other participants of the ECNM. All these activities are voluntarily input to the ECNM. Standardization is a major issue in this regard and should be performed by utilizing suitable partners in the EU or in the local environment (region-specific standards). A major objective for Centers of Excellence is to provide all available information, all required diagnostic tests (often in cooperation with other centers) and state of the art therapy to all patients with mastocytosis. To reach this goal Centers of Excellence will often exhibit features of a local network of scientists and physicians. Centers of Excellence are also expected to develop local guidelines for the management and treatment of patients with mastocytosis, and to join and include cases in the ECNM registry. Each Center of Excellence and each Reference Center should nominate 1 or 2 board members of the ECNM.
Apart from Centers of Excellence and Reference Centers, there will also be a number of other centers and active participants, and it is a critical aim of the ECNM to attract also such participants. These participants will include ‘Associate Centers’ (centers not offering all facilities of a Center of Excellence), ‘Advisors’ (experts from EU or non-EU countries covering various disciplines), so called ‘Research Centers’ (where research on mast cells or mastocytosis is done, but no patients are referred to), ‘Industrial Partners’, ‘Study Trial Partners’, and ‘EU Partners’ (in case of EU trial applications).