Click here to download the EUPSA survey guidelines v2 Febraury 2023
Click here to download the EUPSA Retrospective study guidelines v2 Feb 2023
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
International Study of Neuro-Endocrine Tumours (NET)
Neuro-endocrine tumours (NET) of the appendix are rare in the pediatric population. Most of them are found during histopathological examination of the appendix, removed for the indication of acute appendicitis. Due to their rarity treatment strategies are based on limited data. This study led by Ramon Gorter aims to create a large international dataset to evaluate the outcome of the treatment strategies for appendix NETs in the pediatric population and ultimately improve the care for patients with this rare condition. If you are interested in participating or have any questions please contact: netkids@amsterdamumc.nl
Timing of Inguinal Hernia Repair in Premature Infants
This is an area in which there is considerable variation in practice and a lack of consensus about the most appropriate, clinically effective and cost effective approach. It would be great to be able to find out what current practice exists and what attitudes are in order to understand whether future work should focus on further research in this field or to generate guidance. You can complete the survey here: http://shorturl.at/hOWX9
Management of Undescended Testes
Members will be aware that in 2016 the EAU/ESPU published guidelines aiming to standardise care and improve outcomes in children with undescended testes. However we suspect that there is variable uptake of the guidelines and that as a result they are not being universally implemented. This survey aims to understand how well these guidelines are being adhered to, identify reasons for non-adherence including perhaps that surgeons do not agree with the underlying evidence base or that there are logistical challenges. We hope that by understanding this in more detail we may be able to understand whether there is a need for further research in this field, identify opportunities to overcome logistical barriers and ultimately improve adherence to the guidelines and improve outcomes in the future. You can complete this survey here: https://www.surveymonkey.com/r/33QM83Z
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)