ERNICA - European Reference Network on rare Inherited and Congenital Anomalies (ICAs) aims at improving quality and safety and access to highly specialized healthcare for patients with ICAs including rare-gastrointestinal diseases. These diseases have low and extremely low incidence, for this reason pooling the available resources at European level is a necessity to spur advancements in care and treatment. It is for this reason that our vision is to provide to all European patients, regardless of their origin or economic situation, the best multidisciplinary initial care. ERNICA is set up as a relatively small European Reference Network, bringing together 20 Healthcare Providers from 10 Member States, that aims to grow expertise in the area of prenatal health and in countries where there is a lack of knowledge and expertise.
Motivated by the spirit of bringing in expertise from different specialties and stakeholder groups, ERNICA provides a holistic approach to care for patients with rare inherited and congenital anomalies and support for their families. This takes into account the physical, emotional, social, economic, and spiritual needs of patients and their families, as well as the changing needs throughout the life-cycle. Our work is based on the strategic partnership between healthcare professionals and patient representatives involved in ERNICA that will inform all activities undertaken by the Network. The Multiannual Plan will be focused on the following objectives: 1) understanding the existing resources in the area of diagnostic and treatment, 2) improving the use of common epidemiological tools, 3) identifying the current gaps in the provision of crossborder care and e-services, 4) assessing the educational needs of patients and healthcare professionals, and 5) developing the research agenda on ICAs to address the current gaps. The attainment of these objectives will facilitate access to quality and cost-effective care and reduce inequalities in Europe.
The European Reference Network on rare Inherited and Congenital Anomalies was officially established in March 2017 and is one of 24 European Reference Networks co-funded by the European Union (Health Programme). ERNICA involves teams from 20 European hospitals (10 Member States). Our network covers rare inherited and congenital digestive disorders, including gastro-intestinal disorders, which have in common early manifestation in life and the need for multidisciplinary care and long term follow-up. Many of these children have associated developmental defects and this makes multidisciplinary management and continuity of care extremely important for this group. In providing the best care, the perspectives of patients and their families should be taken into account.
The mission of ERNICA is to:
- Promote initial care for patients via strengthened referral systems
- Provide a resource-hub for patients with inherited and congenital digestive disorders and their families across Europe;
- Increase patient awareness of and encourage care contact time;
- Provide independent and high quality educational opportunities to medical, nursing and other healthcare professionals in inherited and congenital digestive disorders throughout Europe;
- Deliver high standards of care;
- Build capacity where there is lack of knowledge and infrastructure;
- Interconnect healthcare professionals, scientists, patients and the public to improve quality of care;
- Open a dialogue with policy-makers and politicians to overcome existing regulatory barriers for the provision of cross-border care
Network structure with work packages and workstreams.
In the first year ERNICA focused on establishment of an effective network and governance structure, organization of network meetings, patient involvement, development of core outcome sets, EPSA/ERNICA registry, site visit pilot, implementation of the Clinical Patient Management System, and development of a public website. The ERN Collaborative platform was used for internal network communication.
Stated in the mission of ERNICA, the network aims to provide independent and high quality educational and training opportunities to medical, nursing and other healthcare professionals in inherited and congenital digestive disorders throughout Europe. One of first activities in the field of training was the EA site visit organized in Helsinki, Finland. The organization of site visits will be continued in comings years as training is one of the areas where our network can bring added value. Especially members from centers with less experience in the field of rare inherited and congenital digestive disorders are invited to join this kind of training activities.
In the first year the ERNICA kick off meeting (Rotterdam, NL) has been organized and this was extremely important for the purpose of collaboration, involvement and transparency. Around 50 participants attended this meeting and participating HCPs were well represented. From now on these network meetings will be organized once a year and in addition workstream specific meetings are organized. To become a steady referral network for patients with rare inherited and congenital digestive disorders, these meetings are crucial.
One of the main objectives for our ERN is to improve quality of care, by enhancing diagnosis, treatment and follow-up of the patients with rare inherited and congenital digestive disorders. Before improvement can be made, it is important to define the core outcome sets for specific diagnoses. Therefore a literature study was performed by the EA workstream to define Core Outcome Sets in the 2018 consensus meeting. The registration of first users for the Clinical Patient Management System (CPMS) is also considered a major project result for our ERN.
In the CPMS pilot phase ERNICA started with Hirschsprung disease cases and invited related experts for the panel sessions. The aim is to increase the number of patient cases reviewed during the course of the second year, involving more specialties and complex patient cases.
ERNICA kick off meeting Rotterdam.
ERNICA dissemination channels.
Diagnostic criteria defined for workstreams.
Outline EPSA/ERNICA registry.
Site visit Helsinki.
Registration CPMS users.
DISSEMINATION: development ERNICA public website, ERNICA illustrations, CEO hospital meeting, ERN information sessions.
EVALUATION: progress reports for workstreams and work packages.