Resources for health professionals

Survey: Unmet needs of rare and complex diseases related to pregnancy and family planning for patients and caregivers

25 May 2022

An ERN ReCONNECT working group* focused on pregnancy and family planning, launched a survey to capture patients’ and caregivers’ unmet needs related to pregnancy and family planning. The survey is directed to patients with rare and complex diseases (and their caregivers) […] LEARN MORE

Survey: emotional well-being and support groups

04 May 2022

All parents/patients affected by esophageal atresia may participate in this survey. Data collected will be used as part of a PhD study link to Stellenbosch University, South Africa.  The study has been approved by the Health Research Ethics Committee of Stellenbosch […] LEARN MORE

TOFS Video/easy-to-understand introduction to TEF/EA

01 June 2021

This short animation is a comforting and easily followed introduction to TOF/OA.  The terms are clearly explained in a down-to-earth way and there is an overview of what this might mean for your child. It’s creator, Vicki Martin, is an […] LEARN MORE

STEPS-EA trial: an ERNICA multi-center controlled trial

24 April 2021

The STEPS-EA trial is an ERNICA 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 […] LEARN MORE

Anxiety and depression in parents of children born with esophageal atresia: An international online survey study

16 April 2021

Vuokko Wallace, DClinPsych (a),(b), Kirsi Honkalampi, PhD (b), Elizabeth Sheils, MSc (a) (a) Department of Psychology, University of Bath, UK (b) Department of Psychology, University of Eastern Finland, Finland See the article on the Journal of Pediatric Nursing Abstract Purpose […] LEARN MORE

Risk Factors of Early Mortality and Morbidity in Esophageal Atresia with Distal Tracheoesophageal Fistula: A Population-Based Cohort Study

13 April 2021

Rony Sfeir, MD(1), Veronique Rousseau, MD(2), Arnaud Bonnard, PhD(3), Thomas Gelas, MD(4), Madeleine Aumar, MD(1), Nicoleta Panait, MD(5), Christian Piolat, PhD(6), Sabine Irtan, PhD(7), Virginie Fouquet, MD(8), Aurelie Lemandat, MD(9), Stephan De Napoli, MD(10), Edouard Habonimana, MD(11), Thierry Lamireau, PhD(12), […] LEARN MORE

Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies

13 April 2021

Svetlana V. Glinianaia (1), Joan K. Morris (2), Kate E. Best (1), Michele Santoro (3), Alessio Coi (3), Annarita Armaroli (4), Judith Rankin(1) (1) Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom (2) […] LEARN MORE

Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study

30 March 2021

Stefanie Witt 1, Michaela Dellenmark-Blom 2, Susanne Kuckuck 3, Jens Dingemann 4, Kate Abrahamsson 2 5, Carmen Dingemann 4, John Eric Chaplin 5, Benno Ure 4, Monika Bullinger 3, Vladimir Gatzinsky 2, Linus Jönsson 2, Julia Hannah Quitmann 3 1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 – W26, 20246, Hamburg, Germany. 2Department of Pediatric Surgery, Queen Silvia Children’s Hospital, Sahlgrenska […] LEARN MORE