Objectives

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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 the best 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 all patients, and to facilitate referrals to specialists.

Further aims are to record, document, and to report critical information about the pathogenesis, epidemiology, natural clinical course, and treatment response in patients with mastocytosis. To achieve this goal, participants of the ECNM will merge their activities and analyses since mastocytosis is a rare disease. Because of the rarity of the disease, the ECNM will also attempt to establish and to participate in multicenter preclinical and clinical trials. In addition, the ECNM will provide a platform for registry-networking and will invite national registries to exchange and share ideas and projects. In additions, the ECNM is organizing a series of workshops, training courses, and Annual Meetings for participants and interested scientists (see Events).  

A central and most important goal in the Network is to reach an optimal management and optimal therapy for all patients with mastocytosis. To reach this goal, it will be 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 is proposed to reach these objectives:

In a first step, Centers of Excellence will be defined together with Reference Centers for all Issues of Competence. Based on the availability of logistic and other required criteria to call it a Center, various groups and scientists in Europe will be invited to join the ECNM as a Center of Excellence or a Reference Center. In each case, a Center is i) first invited, ii) then will be evaluated to fulfil requirements, and iii) then will be called an Active Center. The ultimate goal of the ECNM will be to have at least 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 Mio people. There is no geographic requirement for the Reference Center type.

Most important goals for the Reference Center will be 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 participanrts of the ECNM. All these activities are voluntarily input to the ECNM. Standardization will be a major issue in this regard and should be performed by utilizing suitable partners in the EU or in the local environment (norm-lines, isocertification, etc). The major objective for Centers of Excellence are to provide the best available information (in mother language), all the required diagnostic tests (often by cooperating with other Centers) and state of the art therapy to all patients with mastoyctosis. To reach this goal Centers of Excellence will often exhibit features of a local network of scientists and physicians. Centers of Excellence may also provide guidelines for the management and treatment of patients, and run local registry files. Each Center of Excellence and each Reference Center should name 1-2 Board Members for 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), ´Consultants´ (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 refered to), ´Industrial Partners´, ´Study Trial Partners´, and ´EU-Partner´ (in case of EU trial applications).   

Mechanistically, the ECNM should develop in a step-wise fashion: In a first step, a European-wide Active Network is formed. In a second step, Centers will initiate collaborative activities and study trials, exchange ideas and networking strategies, and merge efforts and concepts in regular meetings and telenet Conferences. In a third phase a central aim for the Network will be to organize budget for Projects and Clinical Trials. To reach this objective, the Network will apply for EU grants and other grants.

 

 

   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 Cinical Trials 
     
  • Funding, Budget, EU-grant-working
     

Cooperation with Groups in the US and other Non-European Countries