Patient Data Privacy-REDCap

PRIVACY

• We will use your information only for research: The information you share with us regarding your identity, your health, and your survey responses will be de‐identified and combined with data from other individuals. REDCap automated de‐identified data will be used in research analyses, and the results will be presented in scientific conferences and published. These presentations and publications will never show any information that identifies you or any other individual in the study.
• Your information will not be traceable to you personally: Even in research, we will share only de‐identified data that cannot be traced back to you as an individual.
• We will not share your information: We will never sell, rent, or lease your information. We will never voluntarily share identifying information about you without your permission: We may share your de‐identified data with other researchers for research.
• You will see some of your study information: When you registered to participate in the Superficial Siderosis Patient Registry research, you provided us with a username and password. Your username and password are unique to you, so you must protect your login information. You will be prompted to verify or update this information annually.
• Electronic security and adherence to the HIPAA privacy rule: The Superficial Siderosis Patient Registry follows the U.S’s general security guidelines. Health Insurance Portability and Accountability Act of 1996 (HIPAA) and Canadian privacy laws. All registry data is transmitted, stored, and processed in a secure environment.
• The EU General Data Protection Regulation (GDPR) (Regulation 2016/679/EU) came into force on May 25, 2018. It was a first step towards giving EU residents more control over how organizations use their personal data. The GDPR focuses on accountability, transparency, protection, and reliability and aims to reduce data collection from residents without their knowledge and transparency. The SSPR is committed to protecting the privacy and personal data of SS patients living under the jurisdiction of the UK or European Regulation and to ensure that all processing of the data also complies with the GDPR.

No one can provide an absolute data security guarantee; however, your information will be transmitted and stored using state‐of‐the‐art security systems similar to those that protect websites used by banks and electronic health systems. For any questions, please contact the Registry Director (director@ftdregistry.org).