Dear Friends and Colleagues
A couple of years ago we established Paediatric European Digestive Diseases Clinical Research Network (PEDDCReN) and in doing so you put your name forward. With this email we are making you aware of the next phase of this project and hope you will be willing to contribute. The main aim is to identify and study rare and serious complications of paediatric inflammatory bowel disease and improve outcomes for our patients.
This has been made possible due to a very exciting achievement where PEDDCReN was part of a successful H2020 bid called PIBD SET Quality. Led by Prof Frank Ruemmele in Paris this is the first EU funded project of its kind in PIBD.
Rare Complications Study
What we propose to do is to establish the largest ever prospective data set and registry of rare and serious complications of paediatric IBD, many of which most clinicians might only see once or twice in their careers. Hence it is vital to have a large and very open network. (Please do encourage others in your department/region/country who look after patients with PIBD to sign up to receiving this E-Card which they can do by contacting Chronis Kemos or via the PEDDCReN website .)
We will do this by sending all the members of PEDDCReN and other organisations such as PIBD-NET a monthly E-Card to complete (see attached example). This asks if you have seen any children with IBD with one of the rare complications on the list. Precise definitions of each of the conditions are within the survey.
Most of the time all you need to do is click ‘No’ so we know that you have seen the E-card, however in the cases that you do see please just click ‘yes’ and identify which of the .
We will then follow up with an email to you asking for further information, this will be brief and completely anonymous and should take very little of your time.
To find these very rare patients is only possible with a very large and open Network hence the need for as wide a group of clinicians to contribute. There is a similar project for rare diseases in children the UK with an E-Card sent to all paediatricians, this gets >90% response rate (for each monthly email) which shows it can be done without being too time consuming for busy doctors.
Please do email any comments or queries to Chronis at email@example.com, this is the first stage of a 4 year project. We will plan for an open meeting at the next ESPGHAN meeting to present progress.
Nick Croft (Paediatric Gastroenterologist), Chronis Kemos (Data Manager and Analyst) – London, UK
Lissy de Ridder, Martine Aarloom - Rotterdam