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Terms and Conditions

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

Welcome to the FTD Disorders Registry (FTDDR), a fully independent, online patient contact and research registry www.ftdregistry.org (hereafter referred to as the “Website”) operated by the FTD Disorders Registry LLC (San Francisco, CA). 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 non-profit 501(c)(3) organization.

Please contact us if you have any questions about this information prior to using this Website at director@ftdregistry.org. The term “you” refers to a user or viewer of the Website. 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 these Terms and Conditions, detailed below. If you do not agree to be bound by all of the terms you must not access the Website.

Please review our Privacy Statement, 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 Statement 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.

In using the Website, you agree not to impersonate any person or entity, misrepresent any affiliation with another person, entity or association, use false e-mail or other headers or information, or otherwise conceal your identity from FTDDR.

We reserve the right to change the terms listed here. We will notify you to changes via email. You will be responsible for reviewing the Terms and Conditions to determine whether you agree to any new terms. Any 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 FTDDR by email. Otherwise, your silence will be construed as your consent to be bound to any changes made to the Terms and Conditions.

1. In General

The Website is a free source of information regarding Frontotemporal Degeneration research. The FTDDR provides people who register with us ("Registrants ") with updates about FTD ongoing clinical studies and an opportunity to participate in Registry-based research via surveys and questionnaires. It is a resource for those who are motivated to take an active role in scientific advancement in 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.

The Website is not a health care provider; consequently, it is not a substitute for treatment by a physician or any other health care provider. The research opportunities suggested through the Website are for educational and informational purposes only. You are responsible for following up with individual research opportunities and determining what is in your own best medical interests, or those of someone you are caring for or helping with FTD.

The Website depends on its Registrants to provide accurate and truthful information so as to better provide relevant information to its users. You agree that you will provide accurate and truthful information about yourself, and/or your FTD-diagnosed loved one.

2. Visiting Users and Registered Members

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 research opportunities available. Visitors are subject to the Terms and Conditions.

Registration is open to anyone 18 years or older who wants to participate in and receive information about FTD disorders research. FTDDR does not knowingly or specifically collect Information from anyone under the age of 18 through the Website. In order to register, a Registrant must provide their own 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 in its sole discretion. You are responsible for taking reasonable steps to ensure that no unauthorized person shall have access to your FTDDR passwords or accounts. 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 director@ftdregistry.org of any need to deactivate a password.

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 email (“opt-in”). You make revoke the permission you have given us to use your Information to send you emails (“opt-out”) by following the opt-out links in each of the emails that FTDDR sends you or by contacting the Website at director@ftdregistry.org

Once a Registrant has provided their email address, that Registrant can then opt to participant in research and will need to provide more Information including: name, gender, race, zip code, and other topics that may be requested by the Website. The Information provided is subject to the Website’s Privacy Statement and will be kept confidential and will not be shared or sold to anyone and will be used in accordance with these Terms and Conditions. Your Information, accessible through the Website, is not intended to be a medical record under any federal or state law. Information that is submitted to this Website will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and the FTDDR Privacy Policy.

Information provided by Registrants will be used for educational, informational, communication, and research purposes. Registrants will also be provided information about upcoming research opportunities. 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 in a way that does not identify you or any other Registrant individually. FTDDR can also use Information to improve the Website. FTDDR data-sharing may also include third parties doing research, where use of the data is restricted by a contract between FTDDR and a researcher or third party. Names of the Registrants or their individual information will not be shared in this manner.

Registrants must actively enroll (“opt-in”) in additional research opportunities. FTDDR’s notice of an available research or survey opportunity does not automatically enroll a Registrant in that study.

FTDDR may also collect non-personal information from you and about your use of our Website and emails. FTDDR may use “cookies” or “web beacons” to collect non-personal information about your use of our site or emails we send to you. FTDDR does not store any Personal Information in any cookies on your computer, and does not use cookies or web beacons to collect any Personal Information from or about your activities across Websites generally.

3. International Users

FTDDR is currently operating for Registrants only 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 persons. 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.

4. Rules of Conduct

While using the Website, Registrants will comply with all applicable laws, rules and regulations. Registrant shall not use the Website to engage in any Prohibited Conduct. Prohibited Conduct shall include; (i) unlawful, infringing, fraudulent and abusive conduct; (ii) conduct that violates another party’s intellectual property, privacy or other rights; (iii) conduct that interferes with the operation, use or enjoyment of the Website (which may include posting or transmitting any file, or 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).

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.

5. 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, or any link contained in a linked websites, or any links contained in an email, or 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.

6. 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 is prohibited other than in accordance with these Terms and Conditions.

7. Disclaimer on Medical Advice

FTDDR and this Website are not intended to offer medical advice. Please consult your doctor or other qualified health care professional if you have any questions about a medical condition, or before taking any drug, changing your diet or commencing or discontinuing any course of treatment. Information provided on this site is not intended to substitute for professional medical advice if you are seeking care. You should always call your doctor or use appropriate emergency services (such as calling 911) for medical emergencies.

Any content accessed on the Website is for informational purposes only. You are solely responsible for the accuracy of all information contained in your personal health data accessible through the Website. The content accessible through the Website and your personal health data should not be used for the diagnosis or treatment of any medical condition or used during a medical emergency.

8. 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 venturers 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 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, timeliness, and ensure protections against potential viruses and other malicious code in any downloaded matter.

9. 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 (i) use of the Website including but not limited to, your or a Registrant’s access to, submission of, or distribution of, information to or from the Website; (ii) 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, or (iii) any other matter relating to the Website. You understand and agree that FTDDR, its affiliates and /or 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.

10. 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 EXPRESS 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.

11. 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: (I) THE USE OF OR INABILITY TO USE THE WEBSITE; (II) ANY INACCURACIES, ERRORS, OMISSIONS, OR LACK OF AUTHENTICITY IN ANY CONTENT; (III) USE OF ANY CONTENT; (IV) THE COST OF PROCURING SUBSTITUTE SERVICES RESULTING FROM THE USE OF THE WEBSITE (V) ANY LOSS, MISUSE, OR UNAUTHORIZED ACCESS TO OR ALTERATION OF INFORMATION OR MATERIALS TRANSMITTED TO OR CONTAINED ON THE WEBSITE; (VI) STATEMENTS, WARRANTIES, GUARANTEES OR CONDUCT OF FTDDR OR ANY THIRD PARTIES ON THE WEBSITE, OR (VII) ANY OTHER PURPOSE OR MATTER RELATING TO THE USE OF THE WEBSITE. YOU HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH 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.

12. 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.

13. Trademarks, Copyrights and Website Contents

The FTDDR logo is the property of the FTDDR 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.

14. 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 if (a) breaches or violations of these Terms and Conditions or other incorporated agreements or guidelines (b) requests by law enforcement or other government agencies, (c) a request by a Registrant (opt-out), (d) unexpected technical issues or problems, and extended periods of inactivity. All terminations shall be made in FTDDR’s sole discretion and that the 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 Statement, these Terms and Conditions, applicable law, or as the Registrant may have otherwise agreed to in the use of the Website.

15. 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, to us at 637 Carolina Street, San Francisco, CA 94107:

  • Information with 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)
  • A description of the copyrighted work that you claim has been infringed; and a copy of the Website area affected;
  • A statement that the disputed use not authorized by the copyright owner, its agent, or the law; and
  • 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.