Privacy
Privacy statement
This statement covers two things: what happens to your data when you visit this website or email us, and what happens to your data if you take part in the study.
1. This website
This website collects no personal data of its own. There are no contact forms, no accounts, no visitor statistics and no tracking. The eligibility check on the Take part page runs entirely in your own browser: your answers are never sent or stored anywhere, not even locally. Once you close the page, they are gone.
See the cookie statement for what does happen technically when the page loads.
2. If you email us
The buttons on this site open your own email program with a pre-filled message. You decide what to fill in and what to leave out — nothing is sent until you press send.
| What | Detail |
|---|---|
| Which data | Whatever you put in the email yourself: typically name, age, phone number, month of diagnosis and treating centre. |
| Purpose | To contact you about taking part in the BREBAD study and to answer your questions. |
| Legal basis | Your consent (Article 6(1)(a) GDPR), which you give by emailing us and can withdraw at any time. |
| Who has access | The physician-researcher and, where needed, the principal investigator. The email arrives in an AmsterdamUMC business mailbox. |
| Retention | If you do not enrol or are not eligible, we delete your message within 6 months. If you do take part, the retention periods under point 3 apply. |
Email is not an encrypted channel. Do not include more medical information than you are comfortable sharing — we can discuss the rest by phone.
3. If you take part in the study
Once you take part, the rules for medical research apply. The full description is in the participant information you receive before giving consent. In short:
- Your study data are pseudonymised: they carry a code instead of your name. The key linking that code to you stays in a secure environment within AmsterdamUMC.
- Researchers and the statistician work only with the coded data.
- Certain people can access your uncoded data: members of the research team, monitors, the Health and Youth Care Inspectorate, and members of the review committee. All are bound by confidentiality.
- Study data are retained for 25 years after the study ends, as the law requires.
- Published results are never traceable to an individual.
- We ask separately for your consent to use your data or body material for future research. You can decline that and still take part.
4. Your rights
You have the right to access, rectify, erase or restrict the processing of your data, and to withdraw your consent. Once you take part in the study, statutory exceptions apply: data already used in an analysis cannot always be erased, because that would compromise the reliability of the research.
To exercise any of these rights, email j.dengerink@amsterdamumc.nl.
5. Controller and contact
The controller is AmsterdamUMC, Meibergdreef 9, 1105 AZ Amsterdam. For questions about this study: Jordi Dengerink, MD-PhD candidate, j.dengerink@amsterdamumc.nl.
For general privacy questions you can contact the AmsterdamUMC data protection officer via the AmsterdamUMC privacy page. If you disagree with how we handle your data, you can lodge a complaint with the Dutch Data Protection Authority.
Last updated: August 2026. This statement is a plain-language summary; for participants, the participant information takes precedence.