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For Clinicians

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.  

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What we do

Guidelines

This area of work refers to activities related to the development, revision and implementation of care standards  

Training and capacity building

Find more information here about ERNICA's training initiatives.

Clinical management system

The Clinical Patient Management System is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually.

Research

ERNICA's first Randomised Controlled Trial (RCT)

Training and capacity building

Coming soon.

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, abdominal wall malformations 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 cpmshelpdesk@ernica.ern-net.eu  (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.

Newsletters:

Issue 2: March 2020

Issue 3: September 2020

Issue 4: March 2021

Issue 5: December 2021

For any questions please email the STEPS-EA trial team at steps.ea@erasmusmc.nl

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