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 national network of IBD-oriented laboratories, clinical centres, private practice specialists and social and psychosocial medicine 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 outcome, impact of disease and therapy on mental health and other psychosocial factors, and economical aspects of patient care, including cost-effectiveness of novel therapeutical approaches as well as prospective evaluation of indirect costs (sick leave, unemployment, disability allowance etc). 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 rheumatologic diseases or dermatological conditions.
While some aspects of this project are country-specific, the proposed cohort has links to international epidemiological efforts in the field, including the European IBD population-based inception cohort (EC-IBD) and a Marie Curie educational grant in IBD-related epidemiology submitted by the European Crohn’s and Colitis Organization (ECCO), which already supported the development of the EPACT criteria.