The initiative on Crohn's and Colitis, the Netherlands
The initiative on Crohn's and Colitis (ICC) The Netherlands, formerly known as Dutch IBD Research group, was founded in 2003. A group of enthusiastic gastroenterologist from all academic centres in The Netherlands decided that a joint effort in IBD research was needed to improve the quality of life of patients suffering from this chronic, disabling disease.
This improvement of quality of life in IBD patients is the overall goal of the ICC. Three important areas to achieve this were recognized:
- patient education
- doctors and nurses education
- research
Partner in our first goal is the Crohn's Colitis Organization The Netherlands (CCUVN). Together with this patient organization yearly symposia for patients are held in The Netherlands. These meetings are well visited and highly appreciated by our patients.
Education of health care workers is ascertained by offering fellow gastroenterologists working experience in the specialized IBD clinics of the university hospitals. In addition the ICC organizes regional educational programs and is involved in the training program of the Dutch Association of Gastroenterologists (NVGE). To improve standards of care and cure of IBD the ICC joined the development of The Netherlands Guidelines IBD in adults as well in children. The printed guidelines for adults are expected in December 2008. Every year special topic symposia are organized for all healthcare workers involved in the care of IBD patients. This years topic will be "Pregnancy and IBD".
The ICC was already very successful in IBD research, resulted in several presentations at the Digestive Disease Week 2008 and several publications on therapeutic interventions, diagnostic procedures and genetics. Funding for a prospective biobanking was obtained from the Dutch authority and finally has resulted in the "Parelsnoer Initiatief". In translation this means "String of Pearls", the name chosen for this project that aims to created a joined disease specific biobank ("the String") for 8 common diseases of special importance ("the Pearls") in the 8 university hospitals.
The ICC strives to involve all interested gastroenterologists in IBD research and is currently in contact with the Dutch Association of Gastroenterologists to accomplish further collaboration.