The United Registries for Clinical Assessment and Research (UR-CARE) platform is an online international registry capturing IBD patients' records in an easy and comprehensive way. UR-CARE is designed for daily clinical practice and research studies and is available to study groups as well as to individual centres.
Left to Right: Luis de Lorenzo (Persei), Anastasia Agres (Persei), Naila Arebi, Ebbe Langholz, Filip Baert (IBDIM DM), Javier P. Gisbert, Gerhard Rogler, Fernando Magro, Britta Siegmund, Roberto Bravo (Persei)
As UR-CARE is the flagship project of IBD in Motion - IBDiM GmbH (a daughter business unit of ECCO dedicated to research) and as UR-CARE truly became operational in 2017, efforts were started in parallel to establish the structural basis of IBDiM with a perspective towards future growth and success.
• The position of the IBDiM Managing Director had to be assumed by somebody fully familiar with UR-CARE but not holding an active ECCO Committee or GB Position anymore.
The nature of the IBDiM Managing Director position additionally generated the need for a long-term commitment beyond the usual office terms of ECCO: in 2018, Filip Baert assumed the position IBDiM Managing Director.
• For the UR-CARE Steering Committee, the necessity became evident that it should assume the role of the official Advisory Board of IBDiM, while the core task of ensuring fair use of UR-CARE persists.
In this context, legal requirements showed:
o that the position of the UR-CARE Steering Committee Chair had to be kept separate from the position of IBDiM Managing Director: in this context, Gerhard Rogler has now taken over the UR-CARE Steering Committee Chair Position after Ebbe Langholz completed his term.
o that the initially foreseen direct representation of ECCO Committees in the UR-CARE Steering Committee could not be implemented as such:
UR-CARE nevertheless aims to remain a tool for the IBD Community and to serve study ideas of ECCO Officers in the Committees in the form of individual research projects.
Future UR-CARE Steering Committee seats are from now onwards foreseen for a total commitment period of 6 years and are announced with an open call to the IBD Community: this call is open for applications by individual experts, who are supported by one of the ECCO Committees.
Read the full article in JCC - Validation of the “United Registries for Clinical Assessment and Research” (UR-CARE), a European online registry for clinical care and research in IBD
STUDY: DevEloping Clinical decision support system for Inflammatory Bowel Disease treatment de-escalation (DECIDE).
AIM: Generate data that will help the clinician to implement treatment de-escalation for their patients with Inflammatory Bowel Disease in the routine practice.
STUDY: An international Multi-Interventional Registry study for chronic ileoAnal pouCh Leaks in UC (the MIRACLE- project).
AIM: Determine the functional anastomotic integrity rate 12 months postoperative after implementing multi-interventional program based on best peri-operative clinical care and assess long-term functional anastomotic integrity rates for patients that received current peri-operative care by performing a retrospective cohort study.
Learn more about the Governing Structure of UR-CARE
Find the answers to your UR-CARE questions.
This project is facilitated by IBDIM - IBD in Motion GmbH, the Research Unit of ECCO.