Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS)

Current Research Project

Title / Titel: Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS)

Summary / Zusammenfassung: Progress accumulated in the understanding of the genetic and immune pathogenesis of IBD, as well as the advent of modern immuno-modulating and biological therapies, have induced profound changes in the management – and possibly in the outcome - of IBD patients. However, there are major gaps in the knowledge needed for clinical decision making, including long-term drug safety of biological therapies, their interactions with older therapies, the relative benefits of the various possible treatment strategies, the chemo-prevention of colon cancer as well as the influence of current treatment options on patient physical, mental and psychosocial long-term state of health. Likewise, information available for global aspects of health care management of these patients is mostly derived from patient populations exposed to treatment strategies that are no longer the standard of care, and the impact of the novel treatment approaches is not established.

Based on the development of a population-based cohort in the State of Vaud (cohorte vaudoise), on pre-established criteria for appropriateness of care (EPACT), and taking advantage on the existence of a na-tional network of IBD-oriented laboratories, clinical centres, private practice specialists and social and psychosocial medicine as well as paeditric divisions in the country, the development of a prospective, countrywide cohort is proposed. The clinical and socio-economical data as well as the biological samples to be collected in this cohort aim in particular to analyse appropriateness of care, relations between therapy and patient out-come, impact of disease and therapy on mental health and other psychosocial factors, and economical aspects of patient care. As IBD is a typical model of chronic relapsing inflammatory condition, at least some of the information obtained through this cohort may apply to other conditions like chronic rheuma-tologic diseases or dermatological conditions. At this stage 1102 patients are included, 1065 enrolment data sets are completed, and 308 patients already underwent a first annual follow-up.

While some aspects of this project are country-specific, SIBDC is oriented towards international collabo-rations. SIBDC is one of the cohorts included in the EU framework 7 funded IBDase consortium (collabo-ration letter by Dr D. Lottaz previously submitted). SIBDC is one integral part of another project funded by the Crohn’s and Colitis Foundation of America on osteoporosis in young patients (collaboration letter by Pr. S. Ferrari previously submitted). Recently, the European Crohn’s and Colitis Organisation (ECCO) adopted the IBDIS system developed by Pr. W. Reinisch in Vienna as a recommended common data col-lection system within its member scientific communities. We have established contacts with the IBDIS to create a platform able to translate our data in this system. Early feasibility analysis showed a 75% direct homology between the data collection systems, while a further 10-15% of the SIBDC data can be modified to fit the IBNIS database system.

Within the project there is a special paediatric cohort that has been setup by the Division of Gastroenterology and Nutrition of the University Children's Hospital Zurich

The investigators of the SIBDCS are:

Lausanne: Pierre Michetti (Principal Investigator and Study Coordinator), Christian Mottet, John-Paul Vader
Bern: Frank Seibold, Christoph Müller, Roland von Känel
Zurich: Gerd Kullak-Ublick, Gerhard Rogler, Christian Braegger (University Children's Hospital)
St. Gallen: Markus Sagmeister
Basel: Christoph Beglinger
St. Gallen: Markus Sagmeister

Publications / Publikationen: Pittet V, Juillerat P, Mottet C, et al. Cohort profile: the Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS). Int J Epidemiol 2008. http://ije.oxfordjournals.org/cgi/reprint/dyn180v1

Keywords / Suchbegriffe: Inflammatory bowel disease; Morbus Crohn; Colitis Ulcerosa; Indeterminate Colitis; Cohort, Epidemiology; Population-based study; Multicentric, Appropriateness of care, Cost-effectiveness, Mental health, Psychological stress, Quality of life, Biobank

Project Leadership and Contacts / Projektleitung und Kontakte

Prof Christian Braegger , MD (Project Leader)	christian.braegger@kispi.uzh.ch
Dr Michael Friedt, MD	michael.friedt@kispi.uzh.ch
Dr Patrick Bühr, MD	patrick.buehr@kispi.uzh.ch

Funding Source(s) / Unterstützt durch: SNF (Personen- und Projektförderung)
Funded by the SNF (Personen- und Projektförderung) since 2006, Beitragsnummer 3347C0-108792

In Collaboration with / In Zusammenarbeit mit

Prof. Pierre Michetti (Principal Investigator and Study Coordinator)
Service de Gastroentérologie et d'Hépatologie
CHUV
CH-1011 Lausanne

Switzerland

Duration of Project / Projektdauer: Jan 2009 to Mar 2011