Enable new insights - that is the goal we would like to achieve together with medical experts and patients. You can actively support us in this by participating in the SCQM patient registry.
The good news first: Participation in the SCQM patient registry is easy, even if it takes some time. In concrete terms, this means that filling out the medical questionnaire for the respective consultation takes about 20 minutes, which is less time than watching the Swiss daily news.
How do I participate in the patient registry?
Would you like to participate in the SCQM patient registry?
Discuss your participation with your healthcare professional, who will collect the medical data after you have given your consent.
Then sign the consent form, which you can revoke at any time. All data is subject to the Swiss Data Protection Act and is made available to researchers in encrypted form.
You will then be given access to "mySCQM" - a practical web application that you can use both via your computer and smartphone. Here you can view your disease activity and fill out the online questionnaires.
The most important things at a glance:
- Your written consent is required for your registration.
- The data is made available to researchers in encrypted form.
- The use of the registry takes place in cooperation with your doctor.
- Participation is free of charge and can be revoked at any time.
- Without research there will be no new treatments! Make a valuable contribution to rheumatism research!
What information is recorded by your healthcare professional?
The patient registry records, for example, the number of painful joints as well as the drug therapy and its side effects. In addition, the following data is stored:
- Laboratory values
- Ultrasound findings
- X-rays
- Blood samples (with separate consent from you)
Why should I additionally provide blood samples for research?
The SCQM runs a biobank in which blood samples are collected. The great advantage for science is that the blood samples can be used, for example, to research the influence of hereditary factors and the effect of drugs on inflammatory rheumatic diseases. A separate declaration of consent is required from you for the biobank.
What information can patients collect?
You can record the following information via the mySCQM web application:
- Your current quality of life
- Your symptoms (e.g. tiredness or pain)
- Your functional limitations (e.g. problems with getting dressed)
- Your social and everyday life aspects
You can also register for regular short surveys - either via a medical professional or via the SCQM office. These short surveys take only three minutes and guarantee the complete recording of your disease activity.
Transparent and informative: mySCQM
Check the collected data, view the progression of the disease, and record personal notes - mySCQM makes it possible. Learn more.