Security. You are solely responsible for the security of your password and your account, including taking reasonable steps to ensure that no unauthorized person shall have access to your FTDDR password or account. It is your sole responsibility to control the use of your password; to authorize, monitor, and control access to and use of your account; and to promptly inform FTDDR by email to manager@FTDregistry.org of any need to deactivate a password.

User-Submitted Data. Information that is submitted to this Website will be collected, processed, stored, disclosed, and disposed of in accordance with applicable U.S. law, the European Union’s General Data Protection Regulation (GDPR), the FTDDR’s Privacy Policy, and these Terms and Conditions.

In order to register, a Registrant must provide a variety of information including their name, race, gender, ZIP Code, and email address. Please note that you may not register with an email address that is already being used by someone else or that belongs to another person unless you have their consent, except if the email address is owned by multiple individuals in the same household. The FTDDR may refuse to accept an email address if it is already in use by someone else or for any other reason at its sole discretion.

Information provided by Registrants will be used for educational, informational, communication, and research purposes. Registrants’ Information will also be used in an aggregated and de-identified manner for planning and research purposes. This may be to answer questions that the Website may also post in a summary fashion; to improve the Website; or to support third-party research endeavors, where use of the data is restricted by a contract between FTDDR and a researcher or third party. Names of the Registrants and other identifying information will not be shared in this manner.

The Registry is not in any way associated with or responsible for content posted, submitted, or otherwise transmitted to the Website by users. The Registry has the right, but not the obligation, to monitor, review, verify, and correct any errors, inaccuracies, or omissions posted on or transmitted to the Website by users for any reason. The Registry also reserves the right to reject, suspend, cancel, or remove anything that is, in its sole discretion, unacceptable, inappropriate, or not in compliance with these Terms and Conditions. Neither FTDDR, nor its employees, consultants, or other agents will have any liability for taking such actions.

Users must not transmit or otherwise make available on the Website any personal Information of any individual or any material protected by copyright, trademark, publicity, privacy, or other proprietary right without the express permission of such individual or the owner of such rights, respectively. The burden of determining that transmission is permissible, or that the material is not protected by such rights, is on the user. You shall be solely liable for and shall indemnify and hold FTDDR harmless for any damages resulting from any infringement of copyrights, trademarks, or proprietary rights; any violation of privacy or publicity rights; or any other harm resulting from your submissions to, or transmission of information from, the Website.

Other Data. FTDDR’s survey software automatically collects certain technical Information when a Registrant completes a survey. This may include browser type, IP address, operating system type, device ID, device type, and geolocation data. Session cookies are also used to collect an engagement history when a Registrant interacts with the Registry’s emails, social media accounts, and/or Website.

FTDDR does not use cookies or web beacons to collect any personal Information from or about your activities across Websites generally. The user’s browser may be set to not accept cookies. However, in a few cases, some of the Website’s features may not function as a result.

Research Studies, Clinical Trials, and Other Developments. It is the responsibility of all users to stay informed regarding clinical trials, research, and other developments of interest that they might learn about through the Registry or Website. Although the Registry will attempt to distribute relevant information regarding research studies and clinical trials to users based on the information they provide in their Registry profiles, the Registry assumes no responsibility for informing users regarding all such studies and trials, and makes no guarantee as to the completeness or accuracy of such information. The Registry also assumes no responsibility for connecting any user with the provider of a research study or clinical trial. Furthermore, the Registry assumes no responsibility for ensuring the qualification of a user or participation of any user in a study or trial. It is the responsibility of each user to contact the relevant investigators and pursue participation in a study or trial.

Communications from the Registry. Occasionally, the Registry will notify users of updates and other valuable information about the Website and related clinical and research information. You as a Registrant agree that by providing your email and electing to receive updates, you have granted FTDDR permission to use your Information to send you emails (“opt-in”). You may revoke this permission (“opt-out”) by following the preferences or unsubscribe links in each of the emails that FTDDR sends you or by contacting us at manager@FTDregistry.org.

Risk of Using the Website and the Internet. You assume total responsibility and risk for your use of the Website and the Internet. You acknowledge and agree that any uploads or transmissions you make to, from, or through the Website may be intercepted and used by unauthorized third parties and that all the risk associated with these activities is solely yours.

Links to Other Websites. The Website may contain links to other websites that are not under the control of FTDDR. FTDDR is not responsible for the contents of any linked website, any link contained in a linked website, or any links contained in an email. FTDDR is also not responsible for any changes or updates to such websites. The inclusion of any link does not imply endorsement by FTDDR. It is up to you to take precautions to ensure that whatever you select for your own use is free of viruses, worms, Trojan horses, and other items of a destructive nature.