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).
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