Network activities

ERNICA engages in eight 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 diseasesintestinal diseasesintestinal failure and gastroenterological diseases] and 2. Malformations of the diaphragm and abdominal wall)

Management

This area of work refers to the day-to-day management and coordination of the network and its activities.

Dissemination

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.

Evaluation

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

Training

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.

Research

This area of work is coordinated by the ERNICA scientific committee. The committee is responsible for facilitating multi-centre research studies.

e-Health

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.

Fetal medicine

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’.