The Accelerating Medicines Partnership® (AMP®) Parkinson’s Disease (AMP PD) website is a U.S. Government website. AMP PD website usage may be monitored, recorded, and subject to audit, and use of the AMP PD website indicates consent to monitoring and recording. Unauthorized use of the AMP PD website is prohibited and may be subject to criminal and civil penalties.
The content on the AMP PD website is not intended as, and should not be construed as, medical advice. Rather, the AMP PD website’s content is provided for informational purposes, to help visitors better understand the research tools we are developing for Parkinson’ Disease. Consult with a qualified health care provider for diagnosis, treatment, and answers to your personal questions.
Disclaimer of Warranties
The AMP PD program does not make any representations, warranties or guarantees regarding the accuracy, completeness, adequacy or currency of the AMP PD website or its content or your use of the AMP PD website or its content for any purpose. The AMP PD program does not represent or warrant that the AMP PD website will be error-free, free of viruses or other harmful components, or that defects will be corrected. Your use of the AMP PD website and its content are at your own risk.
Linking Policy and Disclaimer of Endorsement
The AMP PD program website may contain links to webpages of third parties as a service to those interested in this information. We do not monitor, endorse, or adopt, or have any control over any third-party content. We undertake no responsibility to update or review any third-party content and can make no guarantee as to its accuracy or completeness. Subject to applicable law, under no circumstances will the AMP PD program be liable in any way for or in connection with any third-party content. Additionally, if you follow a link or otherwise navigate away from the AMP PD website, please be aware that these website policies will no longer apply to your activities, other than with respect to content you have obtained on the AMP PD website. You should review the applicable terms and policies, including privacy and data gathering practices, of any third-party website to which you navigate from the AMP PD website.
When visiting the AMP PD website, your web browser may produce "pop-up" advertisements (advertisements that spontaneously appear on your computer screen). The most likely source of such an advertisement is another website you visited or third-party software on your computer. The AMP PD program does not endorse or recommend products or services featured in advertisements that "pop up" during your visit to our site.
The AMP PD program disclaims all liability for any communications directed to you from any third party directly or indirectly in connection with the AMP PD website. You are solely responsible for assessing and verifying the identity and trustworthiness of the source and content of any such third- party communications.
Use of the Website
Website Limited License
As a user of the AMP PD website, you are granted a nonexclusive, nontransferable, revocable, limited license to access and use the website and its content in accordance with these website policies. We may terminate this license at any time for any reason.
When using information from the website for noncommercial purposes, you must acknowledge the AMP PD program as the source of the information, as follows:
This information was obtained from amp-pd.org. The Accelerating Medicines Partnership® (AMP®) Parkinson’s Disease program is a public-private partnership managed by the Foundation for the National Institutes of Health and funded by the National Institute of Neurological Disorders and Stroke (NINDS) in partnership with the Aligning Science Across Parkinson's, Celgene Corporation, a subsidiary of Bristol-Myers Squibb Company, GlaxoSmithKline plc, the Michael J. Fox Foundation for Parkinson's Research, Pfizer Inc., Sanofi US Services Inc., and Verily Life Sciences.
Limitations on Use
You may not use the AMP PD website and its content for commercial purposes. You may not decompile, reverse engineer, disassemble, rent, lease, loan, sell, sublicense, or create derivative works from the website content, nor may you use any network monitoring or discovery software to determine the site architecture or extract information about usage or users. You may not use any robot, spider, other automatic device, or manual process to monitor or copy the website or its content. You may not use the website to transmit any false, misleading, fraudulent or illegal communications. You may not use the website or its content in any manner that may infringe any copyright, intellectual property right, proprietary right, or property right of any party or violate any state or federal law.
You shall not distribute to any persons or entities identified via the AMP PD website any content or material containing solicitations or advertising of any kind. In no event may any person or entity solicit any users with data retrieved from this website.
Digital Millennium Copyright Act; Notification of Alleged Copyright Infringement
In accordance with the Digital Millennium Copyright Act (the “Act”), the AMP PD program will receive notification of alleged copyright infringement occurring on the website and avails itself of the protections under the Act. If you believe that your copyrighted work is being infringed, notify the AMP PD program at email@example.com. We reserve the right to remove any content or links that allegedly infringe another person’s copyright.
Intellectual Property Rights
The website and its content may be protected by copyrights, trademarks, service marks, patents or other proprietary rights and laws. ACCELERATING MEDICINES PARTNERSHIP and AMP are registered service marks of the U.S. Department of Health and Human Services. Nothing contained herein shall be construed as conferring to you any license or right to any copyright, trademark, or other intellectual property rights.
We reserve the right to investigate complaints or reported violations of these website policies and to take any action we deem appropriate, including but not limited to reporting any suspected unlawful activity to law enforcement officials, regulators, or other third parties and disclosing any information necessary or appropriate to such persons or entities relating to user profiles, e-mail addresses, usage history, posted materials, IP addresses and traffic information.
We reserve the right to change these website policies at any time. Updated versions of these website policies will appear on this website and are effective immediately. You are responsible for regularly reviewing the website policies. Continued use of the website after any such changes constitutes your consent to such changes.
The AMP PD partnership aims to protect personal information received in connection with the AMP PD website from casual visitors and registered users. To setup an account in the AMP PD Knowledge Platform, you will need to provide personal information that may include your name, email, and other information that identifies you personally. We do not require you to register to visit the AMP PD website. However, access to data through the AMP PD Knowledge Platform will be granted only to registered users and will be governed by the AMP PD Data Use Agreement(DUA) . By visiting the AMP PD website or registering for the AMP PD Knowledge Platform, you agree to the following privacy policies that enable your information to be shared as described here.
Information We Collect
The AMP PD program uses web measurement and customization technologies to help our website function better for visitors and to better understand how the public uses the online resources we provide.
We collect only the following information:
the domain name from which you access the Internet
the date and time you access the AMP PD website
the Internet address of the website from which you direct-linked to the AMP PD website
the pages and services you accessed and other service usage patterns.
To further understand usage and make continuous improvements to the website, the AMP PD website uses the Google Analytics tools offered by Google, LLC to capture insights, traffic patterns/trends, and proactively monitor site performance. Google Analytics gathers information automatically and continuously. Under the Google Analytics Terms of Service, no Personally Identifiable Information (PII) is collected. Additionally, Sapient (a contractor to the U.S. Government supporting the AMP PD program) participates in the U.S. federal government’s Digital Analytics Program (DAP), in which Google Analytics data are collected from websites across the federal government.
The AMP PD program never collects information for commercial marketing or any purpose unrelated to the AMP PD program mission and goals.
Except as set forth in this Privacy Statement or as required by law, we will not disclose, sell, rent, share, trade or give away any of your personal information. We may share personal information about you with third parties when we engage them to perform services on our behalf, including maintenance services, hosting, data storage, security, and analytics. We will disclose information about individual users to governmental or judicial authorities, law enforcement agencies, or other individuals or entities when required to do so in response to subpoenas, court orders, or other legal processes. Finally, we may share information to investigate, prevent, or take action regarding suspected illegal activities or fraud, or to enforce this Privacy Statement and other terms and conditions published on the website.
There are two types of cookies, single session (temporary) and multi-session (persistent). Session cookies last only as long as your web browser is open. Once you close your browser, the cookie disappears. Persistent cookies are stored on your computer for longer periods.
Session Cookies: We use session cookies for technical purposes such as to enable better navigation through our site. These cookies let our server know that you are continuing a visit to our site.
Persistent Cookies: We use persistent cookies to enable web analytics to differentiate between new and returning visitors. Persistent cookies remain on your computer between visits to our site until they expire.
How to Opt-out of or Disable Cookies
If you do not wish to have session or persistent cookies placed on your computer, you can disable them using your web browser. If you opt out of cookies, you will still have access to all information and resources on amp-pd.org. Please note that by following the instructions to opt-out of cookies, you will disable cookies from all sources, not just those from amp-pd.org.
When inquiries are e-mailed to us, we store the question and the e-mail address so that we can respond electronically. By sending us an electronic mail message, you may be sending us personal information (e.g., name, address, e-mail address), that could become subject to an official Freedom of Information Act request. We will store your name and e-mail address in order to respond to your request or to otherwise resolve the subject matter of your e-mail. Unless otherwise required by statute, we do not identify publicly who sends questions or comments to our website.
Privacy Statement Updates
As the AMP PD website is updated, portions of this Privacy Statement may be impacted and need to be updated. Any changes will be effective immediately upon the posting of the revised Privacy Statement. Continued use of the website after any such changes constitutes your consent to such changes. The AMP PD program encourages all site visitors to review this page periodically for the latest information on our privacy practices.
Information Security & Assurance
The AMP PD website is fully compliant with the National Institutes of Health Office of the Chief Information Officer (OCIO) IT Governance and Policy.
The AMP PD program works hard to prevent unauthorized accessing, alteration, disclosure, or destruction of the information we hold and publish to the website. We have many data security safeguards in place, employ software programs to monitor traffic to identify unauthorized attempts to upload or change information or otherwise cause damage to the website, and we regularly review our security practices to proactively guard against unauthorized access. Further, information published to the website for public consumption is reviewed by a governing body to ensure information accuracy and integrity are upheld. It is important to remember, however, that no system can guarantee 100% security at all times. Accordingly, we cannot assume responsibility or liability for unauthorized access to our servers and systems.
The AMP PD website is maintained by Sapient, a contractor to the U.S. Government. The website is protected by various provisions of Title 18 of the U.S. Code. Violations of Title 18 are subject to criminal prosecution in federal court. In the event of authorized law enforcement investigations, and pursuant to any required legal process, information from these sources may be used to help identify an individual.
The AMP PD program strives to maintain the security of public and personal information by using appropriate measures designed to protect our website. However, we cannot guarantee the security of any information that is disclosed online. Consequently, we do not insure or warrant the security of any information you transmit, and you do so at your own risk.
Being a public-private partnership, the AMP PD program may share data insights and personal information with companies, organizations or individuals outside of the AMP PD program if we have a good-faith belief that access, use, preservation or disclosure of the information is reasonably necessary, as further described in this Privacy Statement.
The AMP PD program complies with requirements for privacy and security established by the NIH Office of the Chief Information Officer (OCIO).
By using the AMP PD website and by providing personal information, the AMP PD Access and Compliance Team (ACT) is permitted to reach out to you for the purposes of maintaining and updating your user data records, enforcing AMP PD Knowledge Platform data security, providing assistance for AMP PD Knowledge Platform related questions, or sharing relevant website, program, and cohort updates. The AMP PD ACT may also reach out if you have indicated to the ACT that you are interested in sharing your user experience.
User Data Sharing
User data will be made available only to ACT-approved individuals or entities. The data that may be made available include: (i) individual level records with information collected by ACT about volunteered user experience; (ii) aggregate Google analytics data; (iii) any aggregate information volunteered by Terra platform providers; (iv) aggregate information from the AMP PD registration form; and (v) information required to be shared to comply with any applicable legal requirements.
Oversight, Audits and Adjudication
The ACT monitors public activities on the AMP PD website through periodic audits to assess compliance with the AMP PD governance policies. For example, through these audits, the ACT verifies that public content shared on the AMP PD website is being appropriately shared and acknowledged. The ACT does not actively monitor activities or content placed in Terra private workspaces; however, the ACT may audit private workspaces if it believes data is being improperly shared therein. The ACT supports ethical use of the AMP PD website, including adjudicating suspected unauthorized and/or unethical use of data. The ACT relies on the community of researchers and research participants for vigilance against unauthorized and/or unethical use of the AMP PD website. Additionally, the AMP PD program relies on the community to hold itself to the highest standard of collegial behavior. Users unable or unwilling to meet these standards will have their access to the restricted portions of the AMP PD website revoked. Please contact the ACT (firstname.lastname@example.org) if you have questions or suggestions about AMP PD website governance, including the policies, ethics, or rules for data sharing through the AMP PD website.
The AMP PD program is based in the United States. The website is hosted and administrated in the United States or hosted with cloud service providers who are headquartered in the United States. The website and this Privacy Statement are governed by U.S. law. If you are located outside the United States, be aware that information you provide to us or that we obtain as a result of your use of the website will be processed in, transferred to and stored in the United States and will be subject to U.S. law. U.S. privacy and data protection laws may not be as comprehensive as the laws of your country of residence. By using the website or providing us with your information, you consent to the collection, transfer, storage, and processing of information to and in the United States, and you consent to such activities being governed by U.S. law.
Children’s and Minor’s Privacy
The AMP PD website is intended for general audiences and is not targeted to children or minors under 18. We do not knowingly collect personal information from children or minors under the age of 18. If we learn that we have collected personal information from a child or minor under 18, we will take steps to promptly delete the information.
California Privacy Rights
California Civil Code Section 1798.83 permits website users who are California residents to request certain information regarding disclosures of personal information to third parties for their direct marketing purposes. The AMP PD program does not disclose personal information to third parties for their direct marketing purposes.