The DICE EDS & HSD Global Registry Privacy Statement

Updated on June 12, 2022

GDPR Data Privacy Addendum (for European Union)

As a citizen or resident of the European Union, you are protected by the EU’s General Data Protection Regulation (GDPR).  The Ehlers-Danlos Society manages the DICE EDS and HSD Global Registry for the purpose to encourage research into these conditions. The registry is hosted on the secure internationally renowned REDcap platform and our data is stored on the AWS secure cloud storage.

You have these rights under GDPR:

• The right to request information about the handling of your data.
• The right to request correction of data if it is inaccurate or incomplete, and to restrict processing of that data while it is being corrected.
• The right to request transfer of the data we have collected to you or to others in a commonly used format.
• For scientific integrity, access to some of the data may not be allowed until the study ends.
• The right to withdraw consent at any time, including the right to withdraw from any study participation, follow-up or handling of further data, except for data already processed.
• The right to request deletion of your data if the data are no longer needed, or there is no other legal requirement for their use.  However, there is an exception to this right for scientific research such as this project.
• The right to file a complaint with a data protection authority.
• The right to know the recipients or categories of recipients of your personal data, if any, and the identity of the people who may have access to the data.

The European Union has not confirmed that the United States has mandated an adequate data protection level. The measures we will take in protecting your data goes beyond that mandated by law in the United States.

For further information on how we will use your personal data, please see our privacy notice here.