The symposium is co-organised by The Ann Conroy Trust, in association with Aesculap Academia.
The Ann Conroy Trust is Registered Charity No: 1165808.
We provide Support, Education and Research for patients living with Chiari Malformation, Syringomyelia and associated conditions.
F4 Syringomyelia and Chiari in the context of European Reference Networks: the challenge of SYRENET.
Ciaramitaro P, Peretta P, Valentini L, Morar S, Parker F, Poca MA, Sauquillo J, Celada C, Gilanton M, Flint G.
Based on European Union directive 2011/24/EU, on the application of patients' rights in cross-border healthcare, European Reference Networks (ERNs) require 10 healthcare providers, across 8 member states to: 1) facilitate European co-operation on highly specialized healthcare systems; 2) facilitate concentration of expertise for providing high quality healthcare; 3) reinforce research, epidemiological surveillance and training. The main challenge of SYRENET (Syringomyelia and Chiari European Network) will be to decrease existing inequalities in access to high quality health care for syringomyelia and Chiari.
28 centres, from 10 European Countries (Belgium, Bulgaria, Czech Republic, France, Italy, Norway, Portugal, Romania, Spain, United Kingdom) and 1 international partner country (US) are the pilot centres. Key aims are to: 1)create an on-line database, to improve the comprehensive data collection; 2)identify expertise centres, for information collection, medical training, research, and dissemination of information; 3) involve patients, through national syringomyelia and Chiari associations.
Results. CRESSC (www.cressc.org) is an international, multilingual, public and free web platform, easily accessed by clinicians and patients, on multiple devices (computers, smartphones, tablets). Key performance indicators, quantitative and qualitative, such as accessibility of health services, appropriateness, efficacy, safety and quality were identified by the pilot centres of the Network.
Discussion. A shared web platform could reduce the existing variability in diagnostic practices, clinical care and prevention strategies, internationally. A multidisciplinary care model, involving experts in neurology, neurosurgery, neurosciences, genetics, veterinary medicine and drug treatment, will help to identify diagnostic targets and should stimulate innovative therapeutic approaches
SYRENET is an international, multidisciplinary, open, collaborative network, based on a high level of synergy, integration and complementarity, involving expertise centres, patient associations and researchers. An action plan for future collaborative and interdisciplinary research is proposed, backed by Horizon 2020 funding programs and involving European and other international partners.