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Privacy Policy

How we process personal data

We process personal data from SITS Users in the following way:

  • To manage SITS Registry, including your registration and account;
  • To provide you with customer support;
  • To communicate with you regarding updates, technical notices, security alerts, administrative messages, and information regarding changes to our policies;
  • To help authenticate any account you create with us;
  • For our internal purposes (such as auditing, data analysis, and research to improve and develop SITS Registry).

Personal data includes, but is not limited to: Name, E-mail, Address (work), Phone number (work) and Mobile number and information about the SITS Centre that the SITS User is associated with. The legal basis for processing this information is gained by consent from a SITS User in form of the SITS Terms and Conditions agreement.

Sharing of personal data with others (third party)

We engage third-party companies to perform services on our behalf (e.g. software development, software maintenance services, server-hosting, backup services, e-mail service provider). These companies have access to your information to enable them to perform these tasks on our behalf and they are prohibited by us from using or disclosing your information for any purpose other than to provide this assistance (intention of use).

We do not disclose any personal data to a third party that is not linked to SITS with a third-party agreement, Data Processor Agreement, in which it states: to adhere to all laws and regulations that SITS International follows, personal data is never transferred out of the possession of SITS International and is safeguarded with appropriate measures to ensure security and privacy. In the event of a breach, please refer to our Data Breach & Response Policy for more information.  

Third-party websites

Our website may sometimes contain links to external websites or services that we do not control. If you follow a link to an external website, you are encouraged to review the principles for processing of personal data, and information about cookies that apply to the website in question. If we do this with any promotion of an article or publication, then we reserve the right that we are not liable for any actions or consequences of a user following the hyperlink to a third-party site. SITS does not accept liability for the content or accuracy of the information on such a website.

Transfers of data

SITS International does not and will not transfer SITS User’s personal data internationally. The personal data provided by a SITS User is available and disclosed exclusively to SITS Coordinating Team with extended access rights. These personnel adhere to our internal Confidentiality Policy.

SITS Patient data may be shared upon request to SITS scientific collaborators. This is strictly for scientific research purposes and will be subjected for review by the SITS scientific committee.

Security of personal data

Personal User and Patient data is safeguarded from unauthorized access, and unlawful processing or disclosure, as well as accidental loss, modification or destruction, regardless of whether data is processed electronically or in paper form. SITS is taking appropriate measures to ensure high level of security, e.g., require 2-factor authentication for SITS Users and store Patient Data pseudonymised in SITS Registry.    

Your rights

Under the applicable data protection legislation you are entitled, at any time to:

  • request access to the personal data that is processed about you,
  • have erroneous personal data corrected,
  • request that SITS International shall stop processing and delete your personal data,
  • request that the processing of your personal data is restricted,
  • exercise your right to data portability,
  • withdraw consent to particular processing (where such consent has been obtained),
  • object to the processing of the personal data,
  • lodge a complaint with the relevant supervisory authority if you consider that your personal data has been processed in contravention of applicable data protection legislation.

In case you wish to exercise any of the above listed rights, please contact SITS Coordination Office (see Contact information).

SITS International has the right to retain any data or process (under article 89, with lawful basis) that is connected to research or publication for up to 10 years or more (whatever common practice rule apply), for scientific purposes. After this period the data will either be archived after full anonymization or destroyed upon the former request of the owner or user. Personal data is of importance for auditing purpose.  

Updating personal data

You can manually update your personal data by accessing your profile page inside SITS Registry. You can also send an e-mail to the SITS Coordination Office to ask for correction of information (see Contact information).


About cookies

A cookie is a small text file that a website saves on your computer or mobile device when you visit the SITS Registry.

It enables the SITS Registry to remember your actions and preferences over a period of time, to avoid re-entering information whenever you come back to the site or browse from one page to another.

Cookies that we use

  • The purpose of the cookies we use is to authenticate you when logging in to the SITS Registry and to remember your language preference.
  • We only use session cookies, no third-party cookies.

Intellectual property rights

Intellectual property, such as Patient Data, belongs to the SITS Centre that has entered that data into the SITS Registry. SITS respects the intellectual property rights of others and expects its SITS Users to do the same.

It is SITS policy, in appropriate circumstances and at its discretion, to disable and/or terminate the account or access of SITS Users who repeatedly infringe, or are repeatedly charged with infringing the copyrights or intellectual property rights of others.

Suspension and Termination of services

By you:

If you wish to terminate your account, you need to contact the SITS Coordination Office (see Contact information). We would also ask you to provide a reason for termination, if possible. Your account will be locked, and processing of your personal data will only be conducted if needed for an audit. Your data will be destroyed after a retention period. Detailed information can be found in our Data Retention & Disposal policy.

By SITS International:

If a SITS User is inactive for a period of 6 months, then the account will be disabled. The account can be reactivated by contacting the SITS Coordinating Office (see Contact information). The Patient Data from the SITS Centre will be retained. If inactive for more than 18 months then the user account will be subject for deletion.

Limitation of liability

SITS International may change these Terms and Conditions at any time, choose to display or remove posts and content on the SITS Website/Registry, and/or close down the SITS Website/Registry.

and upon next time you login to the SITS Registry. We therefore ask to keep yourself updated with regards to any new version of the Terms and Conditions.

Except as prohibited by law, in no event shall SITS International be liable for any injury, loss, claim, damage or any special, exemplary, punitive, incidental or consequential damages of any kind, whether based in contract, tort or otherwise, which arises out of, or is any way connected with the following:

  • This agreement.
  • Any use of the SITS Services, SITS Website or the SITS Registry. 

Force Majeure

SITS International shall not be liable for events due to legislative enactments, public authority actions, acts of war, strikes, blockades, boycotts, lockouts or other similar circumstances.


Contact information

SITS Coordination Office

SITS International

Karolinska Institutet,

Tomtebodavägen 18A, 5th floor

SE-171 77 Stockholm, SWEDEN

Entry into force

These Terms and Conditions shall enter into force on 25 May 2018. The Terms and Conditions shall remain in force until further notice and shall supersede all previous versions.

Last updated

Last update of SITS Privacy Policy was 2020-10-19. Version 1.0.2.