Who can participate?

Adult individuals with severe kidney failure, including dialysis patients and kidney transplant recipients can participate in this study. Potential participants will be contacted through their nephrologist and given a patient information leaflet explaining the entire study.

Participation is voluntary

Participation in the study is voluntary. You may discuss all information about the study with family or friends before you decide to participate. You can stop at any time. You do not have to give a reason for doing so.

Giving consent

If you decide to participate in the study, we will ask for your consent. This is necessary because it is mandatory that all participants in a scientific study declare in writing that they are participating voluntarily. Without the signed consent form, you cannot participate in the study.

Informing family doctor and/or treating physician

If the researchers need additional information, for example if there is uncertainty about your medication or medical history, they will contact your general practitioner or treating physician. This is always done in consultation with you. Also, if the researchers happen to come across something important to your health during the study, your family doctor and/or treating physician will be contacted. For sharing information with your family doctor and treating physician, you give permission with the consent form.

Privacy

To protect your privacy, we code the data and body materials collected. There is a unique code for each participant. The key to the code is kept in a secure location by your local researcher and is not shared with third parties. When we process your data and body materials, we always use only that code. Even in reports and articles about the study, no one can trace back that it was about you.

Your data

Who can see your data? Some people do have access to your name and other personal information without a code. These are people who check whether the researchers are conducting the study properly and reliably. People working at, for example, the Healthcare and Youth Inspectorate (IGJ) and the European Medicines Agency (EMA) can see your data. These persons will keep your data confidential. We ask you to give permission for this access. All research data (the results and retrieved data) are used only for the Renal Lifecycle study. We do not give anyone your medical information.

Body Material

Your data and your (remaining) body material may also be important for other scientific research in the field of kidney failure and heart failure after the end of this study. For this purpose, your data and body material will be kept for 25 years. In the consent form, you will indicate whether you approve of this. This retention period is set by law for conducting scientific research. After this, all data will be destroyed.