This page contains information that may be of importance to clinicians in the field of rare diseases or any other field of healthcare. ERNICA works on different activities where experts from the network participate or contribute to.
Standards of care
Clinical guidelines / consensus statements
For some rare or complex conditions, there are no clinical guidelines or consensus statements available at present. For some diseases, these are available but some may require review and revision.
ERNICA seeks to endorse, develop or revise existing clinical guidelines and consensus documents to ensure clinical recommendations are made available to clinicians, patients and their families based on research of the highest quality.
In 2018, the first ERNICA consensus conference took place on the management of patients with esophageal atresia and tracheoesophageal fistula. As a result of this conference, two papers were published in the European Journal of Pediatric Surgery.
ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Diagnostics, Preoperative, Operative, and Postoperative Management (published online July, 2019): HTLM version, PDF.
A second ERNICA consensus conference on the perioperative, surgical and long-term management of patients with long-gap esophageal atresia took place in November 2019 and a subsequent paper was published online in the European Journal of Pediatric Surgery in July 2020: HTLM version.
Training and capacity building
Clinical Patient Management System (CPMS)
The Clinical Patient Management System (CPMS) is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases. ERNICA member hospitals and affiliated partners have access to this platform. Centres not involved in ERNICA may be granted guest access to the CPMS if appropriate and on request.
Regular panel discussions take place for Esophageal Atresia, Intestinal Failure, Hirschsprung's Disease and Congenital Diaphragmatic Hernia (CDH) cases.
We encourage ERNICA members to register on the CPMS and make active use of it. Rebecca Pulvirenti (ERNICA's CPMS officer) can support with registration, patient upload and use of the CPMS. She is also able to provide login credentials to the CPMS training environment if requested. Rebecca can be contacted on email@example.com (Note; no patient information is to be emailed).
Prior to case upload, a CPMS patient consent form must be completed and stored locally. These consent forms are available in every European language and are downloadable here.
ERNICA's first Randomised Controlled Trial (RCT)
The STEPS-EA trial is a multi-centre Randomised Controlled Trial looking at intralesional STEroid injections to Prevent refractory Strictures in patients with Esophageal Atresia. The trial involves 1:1 randomization to injection with 10 mg/ml TAC (Kenacort-A 10) prior to balloon dilatation and balloon dilatation without any injection. This trial is in development.
For any questions please email the STEPS-EA trial team at firstname.lastname@example.org