ERNICA is a European Reference Network (ERN) which addresses congenital malformations and diseases that appear early in life and require multidisciplinary care and long-term follow-up, and examines the transition to adulthood.
What will ERNICA do?
ERNICA will focus initially on congenital gastro-intestinal (GI) diseases such as OA, CDH (Congenital Diaphramatic Hernia), Hirschsprungs Disease and Small Bowel Syndrome. It aspires, at a later date, to tackle acquired diseases such as Achalasia (also relevant to OA patients).
It will also co-ordinate efforts with other relevant ERNs, notably the Uro-genital ERN, ERN-LUNG (on rare pulmonary diseases)the Cranio-facial ERN (the latter includes ENT [ear, nose & throat] conditions within its remit).
Key aspects of ERNICA’s work, which are organised through a set of work streams and work packages – and all with patient representation -, include:
– patient referral: processes and mechanisms will be developed (supported by an IT Platform provided by the EU) to ensure the effective referral of complex cases to appropriate specialists in the network (and enhance the cross-border rights of patients [referred to above], by bringing expertise to the patient)
– guidelines: ERNICA will tap into global best practice where it exists and will pro-actively drive the implementation of recognised guidelines; where necessary it will develop new or enhance existing guidelines in collaboration with professional bodies, patient representatives, national health authorities and other ERNs
– follow-up and transition: ERNICA will ensure a multi-disciplinary approach is maintained and that appropriate emphasis is placed on long-term follow-up and on transition from paediatric to adult care for those patients requiring ongoing treatment and care
– registries: wherever practical, existing registries will be exploited, enhanced and implemented to ensure appropriate data is collected as extensively as possible. The focus of these registries will be on outcomes and not on epidemiology
– new treatments: ERNICA will strive to improve access to new surgical techniques and treatments
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– training: capabilities in both surgery and after-care across all EU countries will be promulgated, developed and improved. Training to patients will be provided as well.
– research: appropriate topics for new or further research will be identifed and pursued
Please be assured that your patient representatives will strive to ensure that ERNICA delivers a mix of ‘quick practical wins’ and strategic benefits which – by the nature of complex healthcare – will only bring improved outcomes in the medium and longer terms.
This exciting but challenging healthcare initiative comes at a crucial juncture in Europe’s history, but the launch of ERNs are a visible demonstration of what solidarity in Europe can achieve.
We will post regular updates on ERNICA’s progress.
Graham Slater.
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we are the spanish CDH patient associacion and we were wondering how we could get in contact with ERNICA. Thanks.
PLease; change Small Bowel Disease to Short Bowel Disease in the text above under What wil lERNICA do on https://www.we-are-eat.org/news/ern-on-inherited-and-congenital-abnormalities-ernica/
I would like to make contact because I am just about to embark on a global prospective cohort study on the management and outcomes of a selection of common congenital anomalies involving the gastrointestinal tract. Further details are available on our website: http://www.globalpaedsurg.com. It would be great to connect since our interests are in the same field. Kindest regards, Naomi Wright