Swiss IBD Cohort Study – Digital and viewable at any time
As part of the Swiss IBD Cohort Study, we are investigating throughout Switzerland which factors trigger and influence inflammatory bowel disease. We are interested in the consequences of the diseases on the physical, mental and social condition of adult and pediatric patients. The aim of the cohort is to ensure the improvement of the medical care situation of those affected.
About SIBDC
How to participate
What does the SIBDC offer doctors and patients
Patient Reported Outcomes: iBDialog
How to submit a research project
About Swiss IBD Cohort Study (SIBDC)
The Swiss IBD Cohort Study is an association of physicians and scientists whose goal is to better understand chronic inflammatory bowel diseases (IBD). In 2005, the SIBDCS has been funded by representatives of the IBDnet and was supported by the Swiss National Science Foundation. In 2022, this funding will come to an end and the cohort is now integrated into IBDnet.
Over the past 16 years, SIBDCS staff, doctors and affected persons have anonymously recorded over 30,000 doctors' questionnaires, 15,000 patients' questionnaires and over 45,000 blood, mucous membrane and DNA samples in the SIBDCS database. Based on the abundance of this high-quality data, more than 260 research papers have already been carried out and published.
How to participate?
All patients suffering from Crohn's disease or ulcerative colitis can participate in this study. Patients can only be included in the study through their treating gastroenterologist. For this purpose, the patient must be informed by the doctor about the content and aim of the SIBDCS and sign the consent form. The consent can be withdrawn at a later date, if required by the patient. The doctor or centre wishing to include patients must also be registered as a centre.
Patient data is collected via an eCRF, the eSIBDC. For this, the doctor or nurse needs a personal profile and secure access to the eSIBDC. We use a so-called YubiKey for this.
If you have not yet entered patient data in eSIBDC and need technical help, don't hesitate to contact us.
What does the SIBDC offer doctors and patients?
All patient data are recorded anonymously in the SIBDC; only the treating gastroenterologist has access to the names of his patient data. Today, the cohort has the long-term data of about 3000 patients. In order to continuously improve the quality of patient care, it is important to include many patients in the study over a long observation period.
For Doctors: Patient monitoring
- Patient Monitoring: Data entry into the SIBDC is done by the health care professional via an eCRF, the eSIBDC. With eSIBDC, the treating physician has insight into the course of the disease as well as the course of clinical parameters of his patients at any time, both of which are visually displayed in a scoreboard. Also shown on the scoreboard are the medications the patient has taken or is taking with an indication of why a therapy had to be stopped or adjusted.
- Research: Gastroenterologists who include patients in the SIBDC can submit a research protocol to the Scientific Committee. If this is accepted, the gastroenterologist will receive an extract of the data necessary for the processing of the research project.
For Patients: Patient Reported Outcomes
- PROs: The eSIBDC has the ability to have Patient Reported Outcomes (PROs) recorded by the patient via the iBDialog app on a bi-weekly or monthly basis. This allows the patient to track the progression of their perceived disease activity and the clinician to identify red flags early.
How to submit a research project?
Gastroenterologists who include patients in the SIBDC can submit a research protocol to the Scientific Committee. If this is accepted, the gastroenterologist will receive an extract of the data necessary for the processing of the research project.
If you would like to submit a research project, please follow the steps below:
- Consult the guidelines for scientific projects submission and reviewing
- Fill in the project application form
- Submit the project application form to the scientific committee at least five weeks before the Scientific Committee meeting
- The decision will be made public to the applicant at longest 6 weeks after submission
If your projects has been accepted, the raw data needed for this project will be made available to the applicant. The statistical analysis of the raw data is the responsibility of the applicant.
