IBDream is a registry specifically designed for inflammatory bowel disease (IBD) and will closely follow the philosophy and scope of the other DREAM registries. In 2016, we started with the prospective real-life data collection of IBD patients, including patient-reported outcome measures (PROMs). This registry contains integrated information on diagnosis, treatments, laboratory results, quality of life and other outcomes over time.
IBDream will provide information on long-term safety and effectiveness of treatments and will contribute to optimization of rational pharmacotherapy. The aim of this registry is to deliver transparency on treatment and outcomes to improve the quality of care for IBD patients in the Netherlands and to stimulate scientific research.
IBDream will develop into a fully integrated quality management system in daily practice. The core values to facilitate improvement of the national IBD care include Transparency of IBD care, effectiveness and safety of biological therapies and optimization of IBD pharmacotherapy, benchmarking and patient empowerment.
The five participating centers will provide collectively a cohort of approximately 7000 IBD patients, which will increase with the recruitment of additional centers in the future. Almost 2300 patients have already been included so far.
The IBDream team exists of:
- Radboud University Medical Center, Nijmegen: dr. Frank Hoentjen (chairman)
- Medisch Spectrum Twente, Enschede: dr. Maurice Russel (treasurer)
- Onze Lieve Vrouwe Gasthuis, Amsterdam: drs. Jeroen Jansen (secretary)
- Franciscus Gasthuis en Vlietland, Rotterdam: dr. Rachel West (board member)
- Jeroen Bosch Ziekenhuis, Den Bosch: drs. Tessa Römkens (board member)
- Radboud University Medical Center, Nijmegen: drs. Michiel de Jong (PhD researcher)
Additional information for interested patients (in Dutch)