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

EUPSA member survey on postoperative dilatations following primary reconstruction for anorectal malformations

This survey is now open and will close at the end of October 2021.

The aim of the survey is to define variation in current practice around use of anal dilatations following anal reconstruction for anorectal malformation. A prospective study is being considered to compare the outcomes of routine postoperative dilatation versus no dilatation on a range of outcomes (e.g. stenosis, need for dilatation under GA, reoperation, quality of life) following a PSARP/ASARP/anoplasty procedure for anorectal malformations. This survey will be the first step in defining current practice amongst EUPSA members and will help inform a prospective multicentre international study in the future.

Link to survey:

https://docs.google.com/forms/d/e/1FAIpQLScjq_7bl-KZ75snN1wk2i3hdauarKhZIXSVCbK65_YVaxJVLw/viewform?vc=0&c=0&w=1&flr=0

Others approved studies

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 y 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)

CONNECT study

This study aims to understand the impact of the COVID-19 pandemic on treatment and outcomes of children with appendicitis. It is a mixed retro/prospective study comparing patients treated during 2020 with those treated in 2019. This international multicentre study is being led by Ramon Gorter, MD (Amsterdam, The Netherlands) and Agostino Pierro, MD (Toronto, Canada) and already includes data on over 1500 children. For more information please contact Paul van Amstel, MD p.vanamstel@amsterdamumc.nl or Ali El Ghazzaoui, MD ali.elghazzaoui@sickkids.ca

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