ERNICA engages in nine areas of work ('work packages') which are applicable to both diagnostic groups covered by the network.
(1. Malformations of the digestive system [With working groups for esophageal diseases, intestinal diseases, intestinal failure and gastroenterological diseases] & 2. Malformations of the diaphragm and abdominal wall [With working groups for Malformations of the diaphragm and Abdominal wall defects])
This area of work refers to the day-to-day management and coordination of the network and its activities.
This area of work refers to the distribution of information on ERNICA activities, outputs and events and ERN-developed resources to healthcare professionals, patients and their families/carers across Europe and beyond.
This area of work refers to the practice of monitoring ERNICA’s activities and performance. This is completed in line with the ERN-wide monitoring framework.
Standards of Care
This area of work refers to activities related to the development, revision and implementation of care standards (including clinical guidelines and consensus statements). It also involves building an ERNICA registry.
This area of work refers to activities related to the development and provision of training /educational materials, targeted at both healthcare professionals, patients and families. It also refers to ensuring ERNICA training activities are formally accredited.
This area of work is coordinated by the ERNICA scientific committee. The committee is responsible for facilitating multi-centre research studies.
This refers to clinician use of the EU-developed online platform; the Clinical Patient Management System (CPMS). It also refers to the development and/or use of e-resources and tools.
This area of work is focused on pre-natal diagnostics and intervention, an area of clinical practice relevant to both of ERNICA's diagnostic groups ('Work streams'). ERNICA seeks to facilitate crosstalk on ‘Fetal Medicine’.
This area of work involves liaising and consulting with other groups, organisations and key individuals with relevant specialist knowledge and experience involved in improving the care of patients with rare and/or complex diseases, including those specifically covered by ERNICA.