ERNICA

ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. The network was officially launched in March 2017.

ERNICA is a network of expert multi-disciplinary healthcare professionals from specialised healthcare providers across Europe (‘ERNICA members’). ERNICA has 40 member hospitals across 12 EU/EEA countries.

‘Affiliated partners’ and patient organisations/representatives also form part of the network.

ERNICA aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. Such health goals include: 

• Development of clinical skill
• Increased patient access to high-quality expert care
• Increased diagnosis-specific information available to healthcare professionals, patients and their families/carers

In doing so, ERNICA also seeks to reduce health inequalities across Europe by standardising practices and making high-quality care, information and resources accessible to healthcare providers, patients and their families/carers across Europe, regardless of where they are located. 

To achieve these aims, ERNICA works to meet the following objectives: 

• Clinician use of the Clinical Patient Management System (CPMS) to virtually discuss complex patient cases
• Development and implementation of ERNICA-developed ‘standards of care’ (including clinical guidelines and consensus statements)
• Initiation and conduction of multi-centre high-quality disease-specific research
• Development of standardised outcome measures for standardised data collection
• Development of training programmes and educational materials for healthcare professionals, patients and families/carers
• Use of dissemination channels to publicise ERNICA activities and outputs to healthcare professionals, patients and families/carers across Europe and beyond

ERNICA monitors and evaluates these activities in accordance with the ERN-wide monitoring framework.