This policy describes how IBCSG 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.
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 IBCSG 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 IBCSG Data Protection Officer: firstname.lastname@example.org. 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 IBCSG’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".
IBCSG 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
If you have any questions about the use of your personal data you can contact the IBCSG Data Protection Officer:
Data Protection Officer
International Breast Cancer Study Group IBCSG
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.
IBCSG respects the privacy of visitors to its website. As a result, we have developed this website privacy statement.
PERSONAL INFORMATION COLLECTED AND PROCESSED.
Through this website IBCSG will collect various information about you as follows:
Identifiable Information Submitted by you. We will collect personal information from you that can identify you, such as your name, address, telephone number, e-mail address, and other similar information ("Your Information") when it is voluntarily submitted to us. You may be submitting Your Information to us through a portion of the site that allows you to contact us.
Web Server logs. Like the vast majority of Internet websites, we automatically gather webserver log information from you when you visit one of our websites by the computer that hosts our website (called a "webserver"). The webserver automatically recognises some non-personal information, such as your IP Address, the date and time you visited our site, the pages you visited on our site, the website you came from, the type of browser you are using (e.g., Internet Explorer), the type of operating system you are using (e.g., Windows 10), and the domain name and address of your Internet Service Provider (e.g., AOL). If our site is using cookies (which is disclosed below), the webserver will also collect this information. We often review the server logs to see what website pages are being visited to get a better understanding of how the site is being used by our visitors. This is popularly known as Web Statistics and allows us to maintain and enhance our service. In addition, in cases of system abuse, we may use this information in conjunction with your Internet Service Provider and/or local authorities to trace the source of any such abuse.
IP Addresses. This website uses Internet Protocol (IP) Addresses. An IP Address is a number assigned to your computer by your Internet Service Provider so you can access the Internet. Generally, an IP address changes each time you connect to the Internet (it is a "dynamic" address). Note, however, that if you have a broadband connection, depending on your individual circumstance, it is possible that your IP Address that we collect, or even perhaps a cookie we use, may contain information that could be deemed identifiable. This is because with some broadband connections your IP Address doesn't change (it is "static") and could be associated with your personal computer. IP Addresses are used as part of the webserver log information as stated above.
i) Session Cookies
As you surf around our site, there are often times when we need to remember technical information about you as you surf page to page. We use this technical information in a multitude of ways to enhance your user experience. This cookie contains no personally identifiable information and only lasts until you end your session and leave our site.
ii) Persistent or Login Session Cookie
When you log into a restricted area, we may set a cookie on your PC, to remember your login details. This can be used for your convenience so that on subsequent visits, you aren't required to provide the entire login information again. This cookie will remain on your computer indefinitely, even after you leave our site.
Third party cookies on our sites. IBCSG does not allow third parties to set cookies on your computer through this website unless these cookies are set at our request and are under our direct control and are not used or accessed by such third party except as set forth in this statement.
Refusing and/or Controlling Cookies. Most of this website will still be visible to you if you elect not to allow cookies to be placed on your computer; however, certain functions such as becoming a registered user, may not be available. There are different methods for viewing and deleting cookies set on your machine, depending on the browser you are using.
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.
IBCSG 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.
Your Information may be transferred internationally among IBCSG'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. IBCSG cannot be held liable for any actions by or content of such third-party sites.