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Privacy Policy Version 1.0, 15 September 2021

This policy describes how ETOP IBCSG PARTNERS FOUNDATION uses your personal information, how we protect your privacy when doing so, and your rights and choices regarding this information. We promise to respect any of your personal information which is under our control and to keep it safe. We aim to be clear when we collect your information about how it will be used.

Personal Data Privacy

The type and purpose of personal data collected in clinical trials is described in the patient information and informed consent. The use of your personal data is based on your consent and on legal requirements covering the conduct of clinical trials. The personal data collected in the course of a clinical trial can be retained and processed for a period of 15 years or longer.

For the retrospective translational research projects of the Lungscape and Mesoscape programs, biological samples and data is used from existing collections at hospitals and clinics. This means that the personal data was collected by the hospitals and clinics previously and unrelated to any ETOP IBCSG PARTNERS FOUNDATION studies. The use of this personal data for the Lungscape and Mesoscape programs has been approved by local Ethics Committees. The explicit legal basis for the use of this personal data is a legitimate interest of ETOP IBCSG PARTNERS FOUNDATION for scientific research.

We ensure that there are appropriate technical and organisational controls (including physical, electronic and managerial measures) in place to protect your personal data. Personal data of study participants is collected in coded form (pseudonymised) due to its sensitive nature. This means that ETOP IBCSG PARTNERS FOUNDATION will only receive and process your coded personal data without your name or initials. Only your investigator and his delegates have the key to connect your coded personal data to your name.

You have a right to

  • request access to the personal data that we hold about you.
  • request a copy of the information we hold about you.
  • have inaccurate or incomplete information we hold about you corrected.
  • ask us to restrict the processing of some or all of your personal information.

You may ask us to delete some or all of your personal information, subject to certain exceptions.

If you want to exercise any of the above rights, please contact the ETOP IBCSG PARTNERS FOUNDATION Data Protection Officer: This email address is being protected from spambots. You need JavaScript enabled to view it..

If you participate in a clinical trial, you should contact your treating physician instead in order to preserve the pseudonymisation of your data. Please note that exceptions apply to a number of these rights, and not all rights will be applicable in all circumstances. For example, in order to preserve the scientific integrity of our research, personal data collected in the course of a clinical trial up until you withdraw your consent, will still be used.

If you have consented to your personal data being used for other scientific research purposes in addition to a clinical trial, you have the right to object to that use at any time. If you wish to object to such use, please contact your investigator.

Personal data from studies may be analyzed in any country worldwide.  Such countries may have less data protection safeguards and rights than the country where your study site is located.  Transfer of your personal data to ETOP IBCSG PARTNERS FOUNDATION’s representatives, collaborators, and subcontractors who are located outside of the European Economic Area is protected adequately under separate agreements which include "Standard Data Protection Clauses".

ETOP IBCSG PARTNERS FOUNDATION is committed to act in compliance with the EU General Data Protection Regulation (GDPR). For more information on the GDPR you can visit the following website: www.eugdpr.org

In accordance with GDPR requirements, ETOP IBCSG PARTNERS FOUNDATION has established written procedures to identify any personal data breach, if required to report breaches to the responsible Data Protection Authorities, if applicable to inform affected individuals and to manage and resolve any breaches.

If you have any questions about the use of your personal data you can contact the ETOP IBCSG PARTNERS FOUNDATION Data Protection Officer:

Data Protection Officer

Effingerstrasse 33
3008 Bern
e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Participants in clinical trials should contact their treating physician first in order to preserve the pseudonymisation of their personal data.

If you are not satisfied with the answers you receive, you can also lodge a complaint with a supervisory authority according to EU GDPR. Details of the EU Data.

Protection Authority in your country: http://ec.europa.eu/justice/data-protection/bodies/authorities/index_en.htm.

We may update this Privacy Policy from time to time.

Website Privacy

ETOP IBCSG PARTNERS FOUNDATION respects the privacy of visitors to its website. As a result, we have developed this website privacy statement.

Uses and disclosures.
We will use Your Information to respond to requests you may make of us, and from time to time, we may refer to Your Information to better understand your needs and how we can improve our websites, products and services.

We may share Your Information with agents, contractors or partners of ETOP IBCSG PARTNERS FOUNDATION in connection with services that these individuals or entities perform for, or with, ETOP IBCSG PARTNERS FOUNDATION. These agents, contractors or partners are restricted from using this data in any way other than to provide services for ETOP IBCSG PARTNERS FOUNDATION, or services for the collaboration in which they and ETOP IBCSG PARTNERS FOUNDATION are engaged. We may, for example, provide Your Information to agents, contractors or partners for hosting our website. ETOP IBCSG PARTNERS FOUNDATION requires that such contractors enter into contractual guarantees to observe security and privacy obligations at least as stringent as those set forth in this Privacy Policy.

ETOP IBCSG PARTNERS FOUNDATION reserves the right to share Your Information to respond to duly authorised information requests of governmental authorities or where required by law.

Any third parties we share data with (except for governmental agencies to whom disclosure is required by law) will be contractually obligated to provide a level of privacy protection at least as high as that provided for in this policy.

International transfers
Your Information may be transferred internationally among ETOP IBCSG PARTNERS FOUNDATION's business partners and agents as set forth in the "Use and Disclosures" section of this Privacy Statement. This website is hosted in Switzerland. That means that Your Information that you provide as well as the other information set forth in the "personal information collected and processed" section, is automatically transferred to this hosting centre for storage and processing.

Other important information
Minors. You should be aware that this site is not intended for, or designed to attract, individuals under the age of 18. We do not collect personally identifiable information from any person we actually know is an individual under the age of 18.

Links to other sites. As a convenience to our visitors, this website currently contains links to a number of sites that we believe may offer useful information. The policies and procedures we described here do not apply to those sites. We suggest contacting those sites directly for information on their privacy, security, data collection, and distribution policies. ETOP IBCSG PARTNERS FOUNDATION cannot be held liable for any actions by or content of such third-party sites.