Terms and conditions for children and/or parents

Conditions

The following conditions apply to all visits to and use of the website www.hetklikt.nu. By using this site, the connected users explain to have read the following terms and consent to the terms.

What is KLIK?

KLIK is a method to give a clear overview of what happens with children with a (chronic) disease or (unexpected) admission in a (children's)hospital, and possibly their parents. On the KLIK website you can complete questionnaires about your daily life. The answers are converted into a clear KLIK PROfile. One of the practitioners will discuss the KLIK PROfile with you.

Why KLIK?

With KLIK, we have more insight into how you are doing and we can offer you more directed help if needed. For example, we can help you to acknowledge whether you need more support in relation to physical, emotional, social or educational aspects and how you can focus your improvements.

Confidentiality

The outcomes of KLIK are primarily used for patient care and if authorized by the patient/parent, for scientific purposes. All data are processed confidentially. The data are only shown to the members of the medical treatment team of the patient .

Scientific research

All data are processed confidentially. Personal data collected by KLIK, 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.

Filing / AMC storage time

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.

Privacy

The participating hospitals respect the privacy of all users of its website www.hetklikt.nu and is committed to strictly act according to the applicable privacy legislation. The participating hospitals do not allow user data user data to be shared with third parties. User data is only internally used by practitioners of the participating hospital who have functional needs in the context of the KLIK study.

Amendments to this notice

The participating hospital reserve the right to unilaterally change these terms.

Any questions?

For questions concerning the DROP-IN CENTRE research project, please contact drop-in-centre@klik-uk.org, for questions concerning the PROMOTE study contact promote@klik-uk.org or KLIK-UK for general questions about KLIK-UK info@klik-uk.org.