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(short version)

The FTD Disorders Registry takes your privacy seriously.

  • We protect all information that you provide us. We store your information in a highly secure environment.
  • The personally identifiable information that you provide to join registry research is only seen by the FTD Disorders Registry Director and is never shared.
  • Your information will be “de‐identified” and maintained in the Registry according to a unique coded identification number.
  • De‐identified information may be shared with researchers, clinicians, and other members of the scientific community, including pharmaceutical companies doing clinical trials, but would never be traceable to you as an individual.
  • We will never sell any information you provide to us.
  • You may remove yourself from the Registry and unsubscribe from our emails at any time.

Read our full privacy and security policy below. You may also wish to review Terms and Conditions.


  • 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 information from other individuals. Only this 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 information with other researchers for the purpose of research.
  • You will be able to see some of your study information: When you registered to participate in FTD Disorders Registry research you provided us with a username and password. You can use this to sign into the Registry and see your Participant Dashboard and view some of your data like completed surveys. Your username and password are unique to you so it is important that you protect your login information. You will be prompted to periodically verify or update this information annually.
  • Electronic security and adherence to the HIPAA privacy rule: The FTD Disorders Registry follows the general security guidelines of the U.S. 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.

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 (

Data Security

All study information will be stored in linked data tables. Identifying information (name and email address) will be stored in separate (but linked) data tables so that health‐related data can be viewed by study staff as needed without personal identifiers. The FTD Registry Director is the only person with access to the personally identifiable information.

  • Data transmission: The FTD Disorders Registry currently utilizes 128‐bit secure socket layer (SSL) protocol which protects all data transmission sent over the internet between the web server and every client machine.
  • Secure servers: All study data is housed on a secure server.
  • Antivirus software: All servers are protected from viruses using anti‐virus software. This software automatically checks for virus signature file updates once an hour, and if necessary, directly updates itself. All antivirus software is monitored and network personnel notified in the event that the software stops functioning on a server.
  • Firewall: The network, including all the servers that will store our research data, is behind a secure firewall that does not allow unauthorized access to any research data server.
  • Disaster recovery: The study database is backed up regularly to ensure that no data is lost. Our disaster recovery system also follows Standard Operating Procedures to maintain full security of backup data.
  • Cloud services: In addition to use of our secure servers, we may use your data in conjunction with cloud storage and computing services in order to assist with communication, data collection, storage, and processing. Third‐party vendors will be vetted for their security practices and will meet or exceed privacy and security standards for electronic research health records management.