Swiss Inflammatory Bowel Disease Cohort Study
Networks
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Datasets
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Variables
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The general aim of this study is to provide the Swiss and international scientific, public health and medical community with a disease-oriented prospective cohort of inflammatory bowel disease (IBD) patients.
The objectives are to:
* Provide up-to-date epidemiological data and investigate good or poor prognostic factors;
* Document medical care and health resource consumption to assess appropriateness of care and costs;
* Study psychosocial aspects linked to the disease, and the role of cytokines in the pro-inflammatory response to stress;
* Improve information and communication about the disease;
* Study microbiome composition, and how it is affected by risk and genetic factors
- Start Year
- 2006
- Supplementary Information
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Cohort profile: the Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS). DOI
Cohort Profile Update: The Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS). DOI
Visit SIBDCS
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Design
- Study design
- Cohort
- Follow Up
- After baseline, participants are followed-up on a yearly basis as the cohort is still open.
- Supplementary Information
- The SIBDCS is a longitudinal clinical cohort with an open design.
Marker Paper
Pittet V, Juillerat P, Mottet C et al. Cohort profile: the Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS). International Journal of Epidemiology. 2009;38(4):922-31
PUBMED 18782896
Recruitment
- Recruitment Target
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- Individuals
Number of Participants
- Number of Participants
- 4,300
- Number of Participants with Biological Samples
- 2,700
- Supplementary Information
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Baseline: 4387 participants
Follow-up 2007: 885 participants
Follow-up 2008: 1465 participants
Follow-up 2009: 1820 participants
Follow-up 2010: 2134 participants
Follow-up 2011: 2400 participants
Follow-up 2012: 2769 participants
Follow-up 2013: 2973 participants
Follow-up 2014: 3207 participants
Follow-up 2015: 3467 participants
Follow-up 2016: 3577 participants
Follow-up 2017: 2370 participants
Follow-up 2018: 2400 participants
Follow-up 2019: 3037 participants
Follow-up 2020: 2050 participants
Follow-up 2021: 3000 participants
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Supplementary Information
Information will be provided on the website (currently being updated).
Timeline
SIBDCS population
The population is composed of patients of all ages affected with inflammatory bowel diseases: Crohn disease, ulcerative colitis or indeterminate colitis, and who have a permanent residence status in Switzerland or have contracted Swiss health insurance and is treated on a regular basis for these diseases in Switzerland.
Selection Criteria
- Newborns
- Twins
- Countries
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- Switzerland
- Territory
- Ethnic Origin
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- Health Status
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- Diagnosed with Crohn disease, ulcerative colitis or indeterminate colitis at least 2 months prior to inclusion or have had at least one recurrence of the symptoms.
- Other Criteria
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Participants are included if they have a permanent residence status in Switzerland or have contracted Swiss health insurance and is treated on a regular basis in Switzerland.
Participants are excluded if they have other form of colitis such as infectious colitis (positive culture or parasite search), ischemic colitis, radiation colitis, microscopic colitis, urogenital ulcer (Behçet's disease), eosinophilic enteritis (oeso-gastro or enteritis).
Recruitment
- Sources of recruitment
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- Specific population
- Specific Population
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- Clinic patients
- Supplementary Information
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Recruitment first began in the six major inflammatory bowel disease centres of the university-based tertiary hospitals. Recruitment is fostered by providing information about the study and contacting gastroenterologists by mail or through informational meetings, either in regional or canton hospitals or in private practices. Recruitment of inflammatory bowel disease patients is carried out by their gastroenterologist, either during a routine visit or by mail invitation and is opened to any gastroenterologist practicing in Switzerland. A further channel of information about the study exists through patient organizations, so that patients can be recruited independently, for example those who have been in remission for a long time and who do not currently require any medical attention.
Number of Participants
- Number of Participants
- 4,300
- Number of Participants with Biological Samples
- 2,700
- Supplementary Information about selection criteria
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
SIBDCS - Baseline
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Diagnosis, clinical disease activity, drug therapies, drug adverse events and surgery data; disease location and methods of assessment; disease severity; laboratory values, medical history (TBC ... | 2006 | |
| 1 |
SIBDCS - Follow-up 2007
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Information about diagnosis and clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, ... | 2007 | |
| 2 |
SIBDCS - Follow-up 2008
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2008 | |
| 3 |
SIBDCS - Follow-up 2009
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2009 | |
| 4 |
SIBDCS - Follow-up 2010
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2010 | |
| 5 |
SIBDCS - Follow-up 2011
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2011 | |
| 6 |
SIBDCS - Follow-up 2012
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2012 | |
| 7 |
SIBDCS - Follow-up 2013
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2013 | |
| 8 |
SIBDCS - Follow-up 2014
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2014 | |
| 9 |
SIBDCS - Follow-up 2015
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2015 | |
| 10 |
SIBDCS - Follow-up 2016
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2016 | |
| 11 |
SIBDCS - Follow-up 2017
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2017 | |
| 12 |
SIBDCS - Follow-up 2018
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2018 | |
| 13 |
SIBDCS - Follow-up 2019
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2019 | |
| 14 |
SIBDCS - Follow-up 2020
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2020 | |
| 15 |
SIBDCS - Follow-up 2021
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Clinical disease activity, drug therapies, drug adverse events and surgery data, new exams and findings, complications (extraintestinal manifestations, fistula/abscess, stenosis), and ... | 2021 |
Classifications
- Socio-demographic and economic characteristics
- Lifestyle and behaviours
- Birth, pregnancy and reproductive health history
- Perception of health, quality of life, development and functional limitations
- Diseases
- Symptoms and signs
- Medication and supplements
- Non-pharmacological interventions
- Health and community care services utilization
- Death
- Physical measures and assessments
- Laboratory measures
- Cognition, personality and psychological measures and assessments
- Life events, life plans, beliefs and values
- Preschool, school and work life
- Social environment and relationships
- Physical environment
- Administrative information
Socio-demographic and economic characteristics
Age/birthdate
Sex/gender
Lifestyle and behaviours
Tobacco
Nutrition
Birth, pregnancy and reproductive health history
Puberty, menstruation, menopause and andropause
Pregnancy, delivery and birth
Perception of health, quality of life, development and functional limitations
Life course development
Diseases
Diseases of the digestive system (K00-K93)
Diseases of the musculoskeletal system and connective tissue (M00-M99)
Injury, poisoning and certain other consequences of external causes (S00-T98)
Diseases without precise specification or falling into multiple categories
Medication and supplements
Medication and supplement intake
Posology and protocol of administration
Non-pharmacological interventions
Surgical interventions
Radiological interventions
Laboratory diagnosis interventions
Other and unspecified non-pharmacological interventions
Health and community care services utilization
Hospitalizations
Physical measures and assessments
Anthropometry
Other physical measures and assessments
Laboratory measures
Hematology
Biochemistry
Histology
Administrative information
Identifiers
Date and time-related information
Questionnaire and interview-related information
Data and sample collection center-related information
Other administrative information