Objectives

The general aim of the ECNM is to improve disease-recognition, diagnosis, and therapy in patients with mastocytosis in Europe. To reach these general goals, a number of specific aims have to be envisaged. Important specific aims are to provide all relevant available information about mastocytosis to patients and doctors, to establish standards for diagnostic tests and treatment approaches, to provide access to diagnostic tests and specific treatments for patients with mastocytosis, and to facilitate referrals to specialists.

Further aims are to investigate, record, and report critical information about the pathogenesis, epidemiology, clinical course and treatment responses in patients with mastocytosis. To achieve these goals, participants of the ECNM will merge their activities and analyses, as mastocytosis is a rare disease. Because of the rarity of the disease, the ECNM is also attempting to participate in multicenter preclinical and clinical trials, and to provide academic support in the preparation of innovative observational and clinical trials. In addition, the ECNM will provide a platform for data-networking. In 2012, the official registry of the network (ECNM registry) has been established and started to recruit patients. The ECNM is also organizing a continuous series of workshops, training courses, and Annual Meetings for interested members, physicians, and scientists (see Events).  

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.

Most important goals for the Reference Center 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).   

The ECNM should develop in a step-wise fashion: In a first step, a European-wide active network has been formed. In a second step, centers will initiate collaborative activities and trials, exchange ideas and networking strategies, and merge efforts and concepts in regular meetings and telenet conferences. In this phase the ECNM registry should expand and should serve as a basis of ongoing observational studies on an EU-wide basis.

Objectives - Summary:

  • Net of Centers of Excellence in Europe for Patient Referral
  • Net of Reference Centers for distinct Issues of Competence
  • Guidelines for Diagnostic Tests and Standardization
  • Patient Information in Home Language in each EU-country
  • Collaborations between Centers and Groups
  • Networking in Registries, Clinical Trials, and Preclinical Studies
  • Regular Meetings, Annual ECNM Meetings, Training Courses
  • Development of new Therapeutic Concepts
  • Initiation of Multicenter Clinical Trials 
  • Academic Funding, EU Grant Applications
  • Cooperation with Groups in the US and other Non-European Countries

 

 

 

 

 

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