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Terms and Conditions

Welcome to the FTD Disorders Registry (FTDDR and the Registry), a fully independent, online patient contact and research registry (www.FTDregistry; hereafter referred to as the “Website”) operated by the FTD Disorders Registry LLC (King of Prussia, PA). The LLC was formed in 2015 by two not-for-profit entities, The Association for Frontotemporal Degeneration and The Bluefield Project to Cure Frontotemporal Dementia. The FTDDR LLC is a nonprofit 501(c)(3) organization.

Please make sure you read and understand these Terms and Conditions prior to accessing or using this Website. Each time you access the Website, you agree to be bound by the Terms and Conditions detailed below. If you do not accept all the terms, you may not access the Website or utilize any of the services provided on or through the Website.

Please review our Privacy Policy, which is incorporated into these Terms and Conditions by reference, to learn more about the Website’s policies and procedures for disclosing and using your personal Information (“Information”). Subject to the Privacy Policy and applicable law, FTDDR retains a perpetual, irrevocable, non-exclusive, royalty-free, worldwide license to use and store your information (in any media, currently known or unknown) related to these Terms and Conditions and the provision of the Website.

Please contact us if you have any questions about this information prior to using the Website at manager@FTDregistry.org.

GENERAL, PURPOSE, AND ACCEPTANCE OF TERMS AND CONDITIONS

General. The use of the Website and the services associated with the Website (the “Services”) are governed by the following terms and conditions (herein the “Terms and Conditions”) and a privacy policy (the “Privacy Policy”). Both documents must be read before using the Website and the Services. All pages within the Website are owned and operated by FTDDR.

Purpose. The Website is a free source of information regarding frontotemporal degeneration (FTD) research. The FTDDR provides people who register (“Registrants”) with updates about FTD, ongoing clinical studies, and an opportunity to participate in research via surveys and questionnaires. It is a resource for those who are motivated to take an active role in the scientific advancement of FTD. The Website aims to connect Registrants with FTD research studies in order to make a meaningful difference in the scientific and clinical progress against these diseases.

Acceptance of Terms and Conditions. By using the Website, you represent that you, on behalf of yourself or as a legally authorized representative, accept and agree to these terms. The Terms and Conditions constitute a legal agreement between you and the Registry. If you do not agree to be bound by the Terms and Conditions as well as the Privacy Policy, you may not use the Website or the Services.

The Registry reserves the right to change the terms listed here. We will notify you of changes via email. You will be responsible for reviewing the Terms and Conditions to determine whether you agree to any new terms. Changes made to the Terms and Conditions are effective as of the date they are posted. If you elect to not agree to the changes, you may request to be removed from the Registry by email. (Send an email to manager@FTDregistry.org with the subject line: Remove from Registry.) Otherwise, your silence will be construed as your consent to be bound to any changes made to the Terms and Conditions.

USE OF THE WEBSITE

Legal Capacity. Visitors to the Website may use the site to learn about the Registry, FTD disorders, recent developments in FTD news, scientific advances in the area of treatment, and available research opportunities. Visitors are subject to the Terms and Conditions.

Registration for the Contact Registry is open to anyone who:

  1. is impacted by an FTD disorder, including FTD-diagnosed individuals and their family members, caregivers, and friends.
  2. is at least 18 years of age (19 years in provinces where the age of majority is 19).
  3. is fully able and competent to enter into the terms and conditions set forth in these Terms and Conditions and is otherwise capable of forming legally binding agreements under applicable law.
  4. agrees to be bound by these terms and conditions.

Registration for the Research Registry is open to anyone who:

  1. is impacted by an FTD disorder, including FTD-diagnosed individuals and their family members, caregivers, and friends.
  2. is at least 18 years of age (19 years in provinces where the age of majority is 19).
  3. is a current resident of the United States or Canada. (The Canadian provinces of Alberta, Saskatchewan, and Newfoundland and Labrador are currently excluded.)
  4. is fully able and competent to enter into the terms and conditions set forth in these Terms and Conditions and is otherwise capable of forming legally binding agreements under applicable law.
  5. agrees to be bound by these terms and conditions.

True, Accurate, and Complete Information. If you register to use the Website, you agree that you will provide accurate, truthful, and complete information about yourself and/or your FTD-diagnosed loved one. You also agree not to impersonate any person or entity; misrepresent any affiliation with another person, entity, or association; use false email; or otherwise conceal your identity from FTDDR.

Lawful Use. While using the Website, Registrants will comply with all applicable laws, rules, and regulations. Registrants shall not use the Website to engage in any Prohibited Conduct. Prohibited Conduct shall include:

  1. unlawful, infringing, fraudulent, and abusive conduct.
  2. conduct that violates another party’s intellectual property, privacy, or other rights.
  3. conduct that interferes with the operation, use, or enjoyment of the Website (which may include posting or transmitting any file, computer code, or program — such as viruses, worms, or Trojan horses — that could damage or interfere with the operations of any hardware, software, or telecommunications equipment).

No Unauthorized Use. Registrants may not attempt to gain unauthorized access to the Website or any services, other accounts, computer systems, or networks connected to any server or to any of the services through hacking, password mining, or any other means.

USER CONDUCT AND RESPONSIBILITY

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.

INTERNATIONAL USERS

FTDDR’s Research Registry is currently operating for Registrants in the United States and Canada. FTDDR does not make any claims that information on the Website is appropriate for or may be used outside of these two areas. Access to and use of the Website may not be legal in certain countries or for certain people. If you access the Website from outside of the United States or Canada, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction regarding online conduct, submission of personal Information, and acceptable content.

If you are a Contact Registry participant located outside of the United States or Canada, you acknowledge and agree that the Registry may collect and store your Information outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. By providing the Registry with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction to the U.S. or other jurisdictions with different, and in some cases, lower levels of protection for your Information.

OWNERSHIP OF CONTENT

All FTDDR-generated content available through this Website, including without limitation, any design, layout, look, appearance, software, photographs, images, videos, audio, graphics, or text on this Website (“Content”), and all patent, copyright, trademark, trade dress, domain name, and other proprietary rights are the sole property of the FTDDR, or used by FTDDR with the permission of the owner of such content. You agree to abide by all applicable intellectual property laws and any additional restrictions set forth on this Website in relation to the Content. Reproduction and use, including creating a link to this Website, of any Content are prohibited other than in accordance with these Terms and Conditions.

Third-party trademarks are the property of their respective owners.

DISCLAIMER ON MEDICAL ADVICE

Any content accessed on the Website is for informational purposes only. FTDDR and this Website are not intended to offer medical advice or as a substitute for professional medical judgment, advice, diagnosis, or treatment. Please consult your doctor or another qualified healthcare professional if you have any questions or concerns about your health or medical management. Also, you should never disregard nor delay seeking medical advice relating to treatment because of information featured on or transmitted through the Website. Always call your doctor or use appropriate emergency services (such as calling 911) for medical emergencies.

THIRD-PARTY INFORMATION

FTDDR may include third-party information on the Website for informational purposes. FTDDR is unable to verify the accuracy or completeness of this third-party information. Consequently, you agree FTDDR does not guarantee, and is not liable to you for, the accuracy, results, completeness, authorship, or suitability of any third party content and is not obligated to maintain, verify, update, or post any corrections to such third party information for any reason.

Nothing in the Website referencing any third parties with whom FTDDR conducts business, and nothing in these Terms and Conditions, shall be deemed to create any agency relationship or affiliation with, or endorsement or sponsorship of, such third parties. These references do not make you or make the third parties partners or joint ventures with FTDDR or the Website, or otherwise provide you or any third parties with any rights to act on FTDDR’s behalf.

FTDDR does not expressly, or by implication, endorse, recommend, or make any representations or warranties related to any commercial product, process, or service (whether by trade name, trademark, service mark, generic description, or referral to a distributor or manufacturer) referred to on any third-party site or related to the creation of links to such sites. Before relying on any information contained on any third-party website that might be provided to you by FTDDR on its Website, you should undertake your own independent evaluation of its accuracy, completeness, usefulness, and timeliness, and ensure you have undertaken protections against potential viruses and other malicious code in any downloaded matter.

INDEMNIFICATION

You, as a visitor or a Registrant, agree to indemnify and otherwise hold harmless FTDDR, its officers, employees, agents, subsidiaries, affiliates, and other business partners from any and all liability, including any and all direct, indirect, incidental, special, consequential, or exemplary damages, and any and all costs and/or expenses (including reasonable attorney’s fees) resulting from:

  1. use of the Website, including but not limited to, you or a Registrant’s access to, submission of, or distribution of information to or from the Website.
  2. any misuse, unauthorized access to, disclosure, alteration, or destruction of the Website information contained in the Website, and you or a Registrant’s communications with or through the Website.
  3. any other matter relating to the Website.

You understand and agree that FTDDR, its affiliates, and business partners may disclose information if required to do so by law or in the good faith belief that such disclosure is reasonably necessary to comply with legal process, enforce these Terms and Conditions, or protect the rights, property, or safety of FTDDR users of the Website and the public.

DISCLAIMERS OF WARRANTIES

THE WEBSITE AND THE CONTENT MADE AVAILABLE HEREIN ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS. FTDDR DOES NOT MAKE ANY EXPRESSED OR IMPLIED WARRANTIES, REPRESENTATIONS, OR ENDORSEMENTS WHATSOEVER (INCLUDING, BUT NOT LIMITED TO, WARRANTIES OF TITLE, OR NON-INFRINGEMENT, OR THE IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE) WITH REGARD TO THE WEBSITE, THE CONTENT, OR SERVICES PROVIDED THROUGH THE WEBSITE OR ON THE INTERNET GENERALLY. SOME STATES MAY NOT PERMIT THE DISCLAIMER OF IMPLIED WARRANTIES, SO THE FOREGOING DISCLAIMER MAY NOT APPLY TO SOME REGISTRANTS. FTDDR DOES NOT WARRANT THAT THE WEBSITE WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE WEBSITE WILL BE CORRECTED, THAT ANY INFORMATION CONTAINED ON OR TRANSMITTED THROUGH THE WEBSITE IS COMPLETE OR ACCURATE, THAT USER OR OTHER INFORMATION WILL BE COMPLETELY SECURE FROM UNAUTHORIZED ACCESS OR DISCLOSURE, OR THAT ANY INFORMATION IS FREE OF VIRUSES OR OTHER ROGUE PROGRAMMING.

LIMITATION OF LIABILITY

UNDER NO CIRCUMSTANCES SHALL FTDDR OR ANY OF ITS AFFILIATES, BUSINESS PARTNERS, CONTRIBUTORS, AGENTS, CONTRACTORS, EMPLOYEES OR ANY OTHER PARTIES INVOLVED IN DEVELOPING OR DISTRIBUTING THIS WEBSITE OR PROVIDING CONTENT OR SERVICES THROUGH THE WEBSITE BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, OR CONSEQUENTIAL DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA, OR OTHER INTANGIBLE LOSSES THAT RESULT FROM:

  1. THE USE OF OR INABILITY TO USE THE WEBSITE;
  2. ANY INACCURACIES, ERRORS, OMISSIONS, OR LACK OF AUTHENTICITY IN ANY CONTENT;
  3. USE OF ANY CONTENT;
  4. THE COST OF PROCURING SUBSTITUTE SERVICES RESULTING FROM THE USE OF THE WEBSITE;
  5. ANY LOSS, MISUSE, OR UNAUTHORIZED ACCESS TO OR ALTERATION OF INFORMATION OR MATERIALS TRANSMITTED TO OR CONTAINED ON THE WEBSITE;
  6. STATEMENTS, WARRANTIES, GUARANTEES OR CONDUCT OF FTDDR OR ANY THIRD PARTIES ON THE WEBSITE; OR
  7. ANY OTHER PURPOSE OR MATTER RELATING TO THE USE OF THE WEBSITE.

YOU HEREBY ACKNOWLEDGE THAT THIS SECTION SHALL APPLY TO ALL CONTENT AND SERVICES AVAILABLE VIA THE WEBSITE. IN THE CASE WHERE STATE LAW MAY NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, LIABILITY IS LIMITED TO THE LEAST AMOUNT PERMITTED BY LAW. THE LIMITATIONS OF LIABILITY PROVIDED IN THIS TERMS AND CONDITIONS INURE TO THE BENEFIT OF FTDDR AND ITS RESPECTIVE AFFILIATES, PARTNERS, CONTRIBUTORS, OFFICERS, DIRECTORS, EMPLOYEES, ASSIGNS, ATTORNEYS, AND AGENTS.

GOVERNING LAW AND JURISDICTION

Any disputes arising out of the use of the Website, or the services, or these Terms and Conditions, will be governed by the law of the State of Delaware, regardless of conflict of law principles. Sole and exclusive jurisdiction and venue over any dispute arising out of or relating to these Terms and Conditions shall lie in the appropriate federal or state court in Delaware.

TRADEMARKS, COPYRIGHTS, AND WEBSITE CONTENTS

The FTDDR logo is the property of the FTD Disorders Registry LLC. You agree not to use or display the logo in any manner without FTDDR’s prior written consent. The contents of this Website, including without limitation, software, graphics, text, and information are the sole property of FTDDR, or are used with permission of the owner of the content. All rights, including trademark, domain name, copyrights, and other proprietary rights are the sole property of FTDDR. You may not use any of these without written permission, and you agree to abide by all applicable laws and any additional restrictions herein on the Website content.

TERMINATION

You, as a visitor or Registrant, agree that FTDDR may with or without cause immediately terminate access to the Website or the services without prior notice. Without limiting the foregoing, the following will lead to a termination by FTDDR of use of the Website or service:

  1. breaches or violations of these Terms and Conditions or other incorporated agreements or guidelines.
  2. requests by law enforcement or other government agencies.
  3. a request by a Registrant (opt-out).
  4. unexpected technical issues or problems and extended periods of inactivity.

All terminations shall be made at FTDDR’s sole discretion and that FTDDR shall not be liable to you or any third party for any termination of your account or access to the Website or the services. If a Registrant terminates for any reason, FTDDR shall continue to be able to use any data or information provided to the extent permitted by the Informed Consent the Registrant signed, the Website Privacy Policy, these Terms and Conditions, applicable law, or as the Registrant may have otherwise agreed to in the use of the Website.

NOTICE TO FTDDR UNDER THE DIGITAL MILLENNIUM COPYRIGHT ACT

If you believe that your work has been copied in a way that constitutes copyright infringement, please provide FTDDR with the following information, in writing, at 2700 Horizon Dr., Suite 120, King of Prussia, PA 19406:

  1. Information with the physical signature of the person authorized to act on behalf of the owner of the copyright interest and their relevant contact information (address, telephone, email).
  2. A description of the copyrighted work that you claim has been infringed and a copy of the Website area affected.
  3. A statement that the disputed use is not authorized by the copyright owner, its agent, or the law.
  4. A statement made under penalty of perjury, that the information included in your notification is accurate, that you are acting in good faith, and that you are the copyright owner or authorized to act on behalf of the copyright owner.

These Terms and Conditions were last updated on December 11, 2020.

Version date:  [protocol FTDDR-001v1.1; WIRB study #1162895; original protocol approval 03-07-2016]