Click here to download the EUPSA survey guidelines

Click here to download the EUPSA Retrospective study guidelines

The Network Office welcomes proposals from members wishing to propose studie, for example prospective clinical studies or clinical trials. The Office particularly welcomes approaches from trainee members as well as patient organisations. Any member wishing to propose a study should email details to the Chair Network Office Nigel Hall, MD n.j.hall@soton.ac.uk

All members are encouraged to participate in studies that are currently open. Please follow the links below for more information or to take part.

Current surveys or studies open to participation

Multicentre pan-European study on transition of care from paediatric to adult services

This study is being led by Network Office member Ramon Gorter and has been developed in conjunction with representatives from ERNICA and EUROGen. The aim of the study is to evaluate how transition of care is organized among centres, to try to identify areas of best practice and to be able to share these widely to improve the services offered. To facilitate responses, we are looking please for a representative from each centre to co-ordinate their centre’s response. This will help to avoid duplication of responses and provide the most accurate information. For further information or to register your centre for the study please contact Ramon directly – transitionalcare@amsterdamumc.nl

Small bowel atresia study

This study is being led by our current President Amulya Saxena and aims to document the management and outcomes of infants born with small bowel (jejuno-ileal) atresia. The study is open to all neonatal surgical centers and all centers are encouraged to participate. More information about the study including a brief protocol and the case report form can be found by following the links below. Please contact on email to register your interest for participation in this study – amulya.saxena@nhs.net

International Congenital Lung Malformation Registry (ICLMR)

This study aims to document the clinical features, treatment received and outcome of children born with a congenital lung malformation. Cases diagnosed at any stage can be submitted to the registry including prenatally diagnosed cases and those diagnosed after birth. The registry is capturing all aspects of these case – there is no requirement for any specific treatment. The aim is to collect a large volume of cases worldwide to understand more about this rare group of conditions and how to best treat them. The study is led by Mike Stanton, MD (Southampton, UK) Michael.stanton@uhs.nhs.uk (Website: www.iclmr.org)

Sacrococcygeal teatoma (SCT) study

This study aims to document the recurrence risk for SCT and the factors associated with recurrence. It is a large prospective multicentre study that already involves centres all over the world. This study will help to document the follow-up of children with SCT and should help in better understanding highest risk groups. The study is led by Ernst van Heurn, MD (Amsterdam, The Netherlands) e.vanheurn@amsterdamumc.nl