Read below everything you need to know for the CHILL registration.
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Registration of Hair Loss
Research is being conducted to gain better insight into the
degree of hair loss associated with various types of chemotherapy.
By participating in this study, you help provide future patients with
the most accurate information possible regarding the likelihood of
hair loss. The results of this research contribute to the understanding
of the risk of hair loss during chemotherapy.
Who Can Participate?
Participation is open to all patients at risk of hair loss
due to chemotherapy. You can participate even if you are not using scalp cooling.
What Does Participation Involve?
You will be asked to complete a short online questionnaire during each chemotherapy session. Filling out a questionnaire takes 5 to 10 minutes. If you decide to participate, your nurse will provide you with your registration details. You do not need to make any extra trips to the hospital for this study. You can complete the questionnaires during your chemotherapy session at the hospital or at home.
Stopping Participation
Participation in this study is voluntary. You can stop at any time. If you stop, there will be no consequences for your treatment or aftercare. You can indicate your desire to stop by logging into the system.
The study ends when your hair has completely fallen out. You will then be asked to fill out one final questionnaire.
You will receive a maximum of one reminder email per chemotherapy treatment, provided you have given consent for these emails. If you indicate that you want to stop or that your hair has completely fallen out, you will no longer receive reminder emails.
Data Processing
This study is conducted by the CHILL group. Each hospital is responsible for its own data and is the data processor in the context of European privacy legislation. IKNL, the Netherlands Comprehensive Cancer Organisation, acts as the joint data controller. The combined CHILL data comprises the data submitted by participating hospitals and the data submitted by patients.
Your answers to the questions in the questionnaires will be processed confidentially. We guarantee that the data we present can never be traced back to individual persons. The responses of individual patients are not linked to their names or email addresses.
Patients can withdraw their consent at any time. Their data will then not be used for research or other purposes. However, this data will remain stored if it has already been used for research, as questions may be raised about the validity of the research. Once such questions can reasonably no longer be expected, all data will be deleted.
