The activities grouped under this area of work are linked to ERNICA’s objective to maximise the quality of care provided to patients with rare inherited and congenital digestive disorders.
Guideline / Consensus statement development:
For some rare or complex conditions, there are no clinical guidelines or consensus documents available at present. For some diseases, these are available, but they are in need of review and revision. ERNICA seeks to develop and/or revise existing clinical guidelines and consensus documents, to ensure clinical recommendations are made available to doctors and patients based on research of the highest quality. Patient representatives and healthcare professionals are involved in guideline development and revision.
ERNICA's patient representatives within the Esophageal Diseases working group are currently working on developing a ‘patient journey’ document, alongisde clinicians within the network. Creation of these documents asks patient representatives to reflect on their own personal journey with the rare disease they represent and map what their needs were against what would have been the 'ideal clinical care' at each stage.