PNET5-medulloblastomundersøgelse
The following conditions apply to all visits to and use of the website https://staging-pnet5.klik-eu.org/da/. By using this site, the connected users explain to have read the following terms and consent to the terms.
With KLIK-SIOPE, we have more insight in how you are doing and we can offer you more directed help if needed. For example, we can help you to learn how to cope with the chronic illness.
The outcomes of KLIK-SIOPE are primarily used for patient care and, if authorized by the patient/parent, for scientific purposes. All data are processed confidential. The data are only shown to the members of the medical treatment team of the patient.
All data are processed confidential. Personal data collected by KLIK-SIOPE, will be replaced by a code number. Only that number will be used for study documentation, in reports or publications about this study. Only the one who has the key to the code (the researcher) knows who the person behind the code is.
Data that can be traced back to you, can only be viewed by authorized persons with your permission. Research data will be handled in accordance with the Wet bescherming persoonsgegevens (a law to protect your personal data) and the privacy regulations of the Academic Medical Center. There are no risks or hazards in this study Voluntary participation
Participation in scientific research is completely voluntary. If you do not want to participate in research, you do not have to. Even if you consent now, you can always withdraw this consent without giving reasons.
In various sources, various storage times refer to research data from human-related research. In the GCP Directive, a storage time of at least five years is mentioned. The Wet op de geneeskundige behandelingsovereenkomst (WGBO, Law on Medical Treatment Agreement) sets the limit at 15 years. The AMC has chosen for a mandatory storage time of 15 years of completed research for all human-related research for which a METC approval is required.