ERNICA

ERNICA 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.

The network is organised around two main work streams in line with ORPHANET classifications and ICD10. One work stream deals with malformations of the digestive system and the other deals with malformations of the diaphragm and abdominal wall. In the latter work stream, there are working groups covering malformations of the oesophagus and a group working on gastroenterological and intestinal diseases. This group also includes a sub-group specialising in intestinal failure. Each working group has its own disease-specific task forces.

For some of these rare diseases, mortality rates can be as high as 50 %. ERNICA aims to improve the quality of care that patients receive and to reduce the long-term impact of these rare diseases in infants. The network will facilitate research collaborations with the power to develop evidence-based clinical uidelines. Access to new surgical techniques and treatments will also be improved.

ERNICA is a meeting place for national patients’ associations and caregivers, including nurses and other professions committed to improving patient outcomes.

Registry

Contact information

Publications

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Below an overview is given of scientific publications related to ERNICA. Publications were obtained from the PubMed database. All publications where one of the authors has an affiliation link where "ERNICA" is mentioned, are added to the publication overview automatically. Updates are performed once a week.

Filter list publications

TitleAuthorsDateKeywordsIssue name
A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field.Spivack OKC, Dellenmark-Blom M, Dingemann J, Ten Kate CA, Wallace V, Bramer WM, Quitmann JH, Rietman A2024-04-01European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Validation of the Clavien-Madadi Classification for Unexpected Events in Pediatric Surgery: A Collaborative ERNICA Project.Madadi-Sanjani O, Kuebler JF, Brendel J, Costanzo S, Granström AL, Aydin E, Loukogeorgakis S, Lacher M, Wiesner S, Domenghino A, Clavien PA, Mutanen A, Eaton S, Ure BM2024-03-16Adverse events, Clavien-Dindo, Clavien-Madadi, Complications, Unexpected eventsJournal of pediatric surgery
Long-Term Evaluation of the Shape of the Reconstructed Diaphragm in Patients with Left-Sided Congenital Diaphragmatic Hernia Using Serial Chest Radiographs and Correlation to Further Complications.von Schrottenberg C, Lindacker M, Weis M, Büttner S, Schaible T, Boettcher M, Wessel LM, Zahn KB2024-01-22CDH, chest radiographs, comorbidities, congenital diaphragmatic hernia, long-term follow-up, reconstructed diaphragm, recurrenceJournal of clinical medicine
Selection of Quality Indicators to Evaluate Quality of Care for Patients with Esophageal Atresia Using a Delphi Method.Teunissen NM, Brendel J, Heurn LWEV, Ure B, Wijnen R, Eaton S2023-12-12European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture.de Beaufort CMC, Aminoff D, de Blaauw I, Crétolle C, Dingemann J, Durkin N, Feitz WFJ, Fruithof J, Grano C, Burgos CM, Schwarzer N, Slater G, Soyer T, Violani C, Wijnen R, de Coppi P, Gorter RR2023-12-01Adult care, Anorectal malformation, Hirschsprung disease, Transition of careJournal of pediatric surgery
Implementation and validation of a novel instrument for the grading of unexpected events in paediatric surgery: Clavien-Madadi classification.Madadi-Sanjani O, Kuebler JF, Brendel J, Wiesner S, Mutanen A, Eaton S, Domenghino A, Clavien PA, Ure BM2023-04-12The British journal of surgery
Patients' Quality of Life is Severely Impacted by Mere Discussions without Realization of the Imperative Centralization of Specialist Surgery and Subsequent After-Care.Schmiedeke E, Schwarzer N, Widenmann-Grolig A, Aminoff D, Slater G2023-04-01European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Long-Term Evaluation of Gastroesophageal Reflux in Neonates with and without Preventive Anti-reflux Surgery at the Time of Congenital Diaphragmatic Hernia Repair.von Schrottenberg C, Deeg S, Weiss C, Adam R, Wessel LM, Boettcher M, Zahn KB2022-07-29CDH, GER, congenital diaphragmatic hernia, fundoplication, gastroesophageal reflux, long-term follow-up, preventive anti-reflux surgeryChildren (Basel, Switzerland)
Small Bowel Obstruction After Neonatal Repair of Congenital Diaphragmatic Hernia-Incidence and Risk-Factors Identified in a Large Longitudinal Cohort-Study.Zahn KB, Franz AM, Schaible T, Rafat N, Büttner S, Boettcher M, Wessel LM2022-01-01adhesions, adhesive small bowel obstruction (SBO), congenital diaphragmatic hernia (CDH), intestinal complications, longitudinal follow-up, risk factorsFrontiers in pediatrics
Objective Professionals, Subjective Patients? Unbiased Thinking Facilitates Better, Multidimensional Treatment.Schmiedeke E, Ohlms J, Faiss M, Stamatopoulos E, Schwarzer N, Widenmann-Grolig A, Aminoff D, Haanen M, Cavalieri D, Jenetzky E2021-10-01European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Longitudinal Follow-Up With Radiologic Screening for Recurrence and Secondary Hiatal Hernia in Neonates With Open Repair of Congenital Diaphragmatic Hernia-A Large Prospective, Observational Cohort Study at One Referral Center.Zahn KB, Schaible T, Rafat N, Weis M, Weiss C, Wessel L2021-01-01CDH, cone-shaped patch, congenital diaphragmatic hernia, longitudinal follow-up, radiologic screening, recurrence, risk factors for recurrence, secondary hiatal herniaFrontiers in pediatrics
Letter to the Editor concerning Schmedding et al.: Decentralised surgery of abdominal wall defects in Germany (Pediatr Surg Int (2020) 36:569-578).Schmiedeke E, Aminoff D, Schwarzer N, Slater G, Power B, Widenmann-Grolig A, Feitz W, Wessel L, Wijnen R2020-09-01Pediatric surgery international
Non-financial conflicts of interest: contribution to a surgical dilemma by the European Reference Networks for Rare Diseases.Schmiedeke E, Schaefer S, Aminoff D, Schwarzer N, Jenetzky E2019-09-01Anorectal malformation, Congenital malformation, European Reference Networks, Non-financial conflict of interest, Patient organisation, Volume-outcome relationshipPediatric surgery international
Prenatal diagnosis and management of congenital diaphragmatic hernia.Basurto D, Russo FM, Van der Veeken L, Van der Merwe J, Hooper S, Benachi A, De Bie F, Gomez O, Deprest J2019-07-01Congenital diaphragmatic hernia, Prenatal prediction, Prenatal therapy, Pulmonary hypoplasia, SildenafilBest practice & research. Clinical obstetrics & gynaecology
Lower Distending Pressure Improves Respiratory Mechanics in Congenital Diaphragmatic Hernia Complicated by Persistent Pulmonary Hypertension.Guevorkian D, Mur S, Cavatorta E, Pognon L, Rakza T, Storme L2018-09-01congenital diaphragmatic hernia, persistent pulmonary hypertension, positive end-expiratory pressure, respiratory mechanicsThe Journal of pediatrics
Fetoscopic endoluminal tracheal occlusion and reestablishment of fetal airways for congenital diaphragmatic hernia.Van der Veeken L, Russo FM, De Catte L, Gratacos E, Benachi A, Ville Y, Nicolaides K, Berg C, Gardener G, Persico N, Bagolan P, Ryan G, Belfort MA, Deprest J2018-01-01CDH, Congenital diaphragmatic hernia, FETO, Fetal endoluminal tracheal occlusion, Fetal surgery, FetoscopyGynecological surgery
A Vestibular Rapid Palatal Expander.Porseo M, Monaco B, Festa F, Fiorillo G2016-02-01Journal of clinical orthodontics : JCO
TitleAuthorsDateKeywordsIssue name
Last update: April 29th, 2024 on 15:31