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Privacy Policy

Last updated: December 21, 2022

Welcome to the Privacy Notice for the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a research study led by faculty at the Northern California Institute for Research and Education, the University of California, San Francisco (UCSF), and overseen by the Institutional Review Board Advarra. The overall goal of the ADNI study website is the recruitment, assessment, and longitudinal monitoring of adult volunteers for Alzheimer’s disease research. This Privacy Notice explains how the Alzheimer’s Disease Neuroimaging Initiative collects, uses, discloses, and otherwise processes personal information (as defined below) in connection with our website, adni4.org and other websites we own and operate that link to this Privacy Notice (the “Sites”), and the related content, platform, services, products, and other functionality offered on or through our services (collectively, the “Services”). It does not address our privacy practices relating to ADNI study data collected after consent, or related to ADNI research staff and other personnel. 

Alzheimer’s Disease Neuroimaging Initiative is the controller of the personal information we hold about you in connection with your use of the Services. This means that we determine and are responsible for how your personal information is used. 

This Privacy Notice does not apply to the collection, use, and disclosure of your protected health information, if applicable.  For more information about how your protected health information is collected, used, or disclosed, please refer to the informed consent forms associated with the Alzheimer’s Disease Neuroimaging Initiative (ADNI).

WHAT IS PERSONAL INFORMATION?

When we use the term “personal information” in this Privacy Notice, we mean any data or information that identifies, relates to, describes, is capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular natural person or household or any other data or information that constitutes “personal data”, “personal information,” or “personally identifiable information.”  

I. OUR COLLECTION AND USE OF PERSONAL INFORMATION

We collect personal information in a variety of ways. For example, you may provide us your personal information when you contact us or send us messages, conduct a search on our Sites, subscribe to our mailing lists, newsletters or other forms of marketing communications, participate in a survey, or use some other feature of our Service.

We may link or combine your activities and information collected from you on our websites with information we receive from third parties, as well as information we collect automatically through tracking technologies (defined below). This allows us to provide you with a personalized experience regardless of how you interact with us.

Personal Information Collected from You

We may collect the following categories of personal information submitted to us by individuals through the Services:

  • Contact Information, including first and last name, email address, phone number, and street address. We use this information to fulfill your request, to communicate with you directly, and to send you marketing communications in accordance with your preferences.
  • Inquiry and Communications Information, including information provided in custom messages sent through forms, in chat messages, to one of our email addresses, or via phone. We use this information to investigate and respond to your inquiries, and to communicate with you, to enhance the Services we offer to our users and to manage and grow our study and organization.
  • Newsletter and Marketing Emails, including email address and applicable interests and communication preferences. We use this information to manage our communications with you and send publications or other materials highlighting the latest findings in medicine, research and wellness to support healthy active living.  If you wish to stop receiving email messages from us, simply click the “unsubscribe link” provided at the bottom of the email communication. Note that you cannot unsubscribe from certain services-related email communications (e.g., account verification, technical or legal notices).
  • Survey Information, including information provided when you provide information included in any questions submitted through surveys or content of any testimonials. We use this information to administer and facilitate the Services, to respond to your submission, to communicate with you, to conduct research, inform and improve our recruitment activities and to achieve our research goals. 
  • Feedback Information.  We may collect feedback you provide relating to our Services. We use this information to communicate with you, to conduct market research, inform our marketing and advertising activities, improve our Services and increase participation in the ADNI study.

Personal Information Automatically Collected

As is true of many digital properties, we and our third-party partners may automatically collect certain information from or in connection with your device when visiting or interacting with our Services, such as the list below and in the sub-sections here:

  • Log Data, including internet protocol (IP) address, operating system, device type and version, browser type and version, browser id, the URL entered and the referring page/campaign, date/time of visit, other user agent string data, the time spent on our Services, and any errors that may occur during the visit to our Services). Log data may overlap with the other categories of data below.
  • Analytics data, Including the electronic path you take to our services, through our services and when exiting our services, UTM source, as well as your usage and activity on our services, such as the time zone, activity information (first and last active date and time), usage history (flows created, campaigns scheduled, emails opened, total log-ins) as well as the pages, links, objects, services you view, click or otherwise interact with. 
  • Location data, such as general location information we derive from your IP address. 

We and our third-party providers may use (i) cookies or small data files that are stored on an individual’s computer and (ii) other, related technologies, such as web beacons, pixels, embedded scripts, location-identifying technologies and logging technologies (collectively, “cookies”) to automatically collect this personal information. We may also use this information to distinguish you from other users of our Services. This helps us monitor and analyze how you use and interact with our Services and understand which individuals may be interested in learning more about the Alzheimer’s Disease Neuroimaging Initiative and learning more about study opportunities. 

For more information about these practices and your choices regarding cookies, please see the Cookie Notice. 

Personal Information from Third Parties

We also obtain personal information from third parties, which we often combine with personal information we collect either automatically or directly from an individual.

We may receive the same categories of personal information as described above from the following third parties:

  • Social Media: When an individual interacts with our Services through various social media networks, such as when someone “Likes” us on Facebook or follows us, comments, or shares our content on Facebook, Twitter, or other social networks, we may receive some information about individuals that they permit the social network to share with third parties. The data we receive is dependent upon an individual’s privacy settings with the social network and may include certain profile information. We use this information to operate, maintain, and provide to you the features and functionality of the Service, as well as to communicate directly with you, such as to send you email messages.
  • Service Providers: Our service providers that perform services solely on our behalf, such as survey/questionnaire providers, marketing providers and payment processors, customer service management platforms, may collect personal information and often share some or all of this information with us. The information may include contact information, demographic information, transaction information, and information about your communications and related activities. We may use this information to administer and facilitate our Services and our marketing activities.
  • Community Partners: We may receive your personal information, such as name and email address, from our community partners through which we may offer events, programs, or services that contribute to improving the lives and livelihoods of our communities.
  • Other Sources: We may also collect Personal Information about individuals that we do not otherwise have from, for example, publicly available sources, third-party data providers, or through transactions such as mergers and acquisitions. We use this information to operate, maintain, and provide to you the features and functionality of the Service, as well as to communicate directly with you, such as to send you email messages about products and services that may be of interest to you.   

Through the provision of our Services, we may also process anonymous and otherwise deidentified information that cannot reasonably be used to infer information about, or otherwise be linked to, a particular consumer or household.  The Alzheimer’s Disease Neuroimaging Initiative commits to maintain and use the information in deidentified form and will not attempt to reidentify the information, except in instances where necessary for determining whether the deidentification process used by the Alzheimer’s Disease Neuroimaging Initiative satisfies the requirements under applicable law.

Additional Uses of Personal Information

We may use personal information we collect to: 

  • Fulfill or meet the reason the information was provided, such as to fulfill our research goals, contractual obligations, to deliver the Services you have requested;
  • Manage our organization and its day-to-day operations; 
  • Communicate with individuals, including via email, social media, chat and/or telephone calls;
  • Request individuals to complete surveys about our organization, organizations we partner with, and Services; 
  • For recruitment purposes, including to market to you or offer you through email, direct mail, phone, or chat, information and updates we think that you may be interested in, such as other studies from our research team or from a trusted organization; 
  • Administer, improve and personalize our Services, including by recognizing an individual and remembering their information when they return to our Services;
  • Identify and analyze how individuals use our Services, and to improve and customize our Services to address the needs and interests of our user base and other individuals we interact with;
  • Test, enhance, update and monitor the Services, or diagnose or fix technology problems; 
  • Help maintain the safety, security and integrity of our property and Services, technology assets and business;
  • To fulfill any other purpose for which you provide personal information and or any other lawful purpose, or other purpose that you consent to.

Where you choose to contact us, we may need additional information to fulfill the request or respond to inquiries. We may provide you with additional privacy-related information where the scope of the inquiry/request and/or personal information we require fall outside the scope of this Privacy Notice. In that case, the additional privacy notice will govern how we may process the information provided at that time. 

Alzheimer’s Disease Neuroimaging Initiative (ADNI) information management practices conform to the requirements of the Information Practices Act of 1977 (Civil Code Section 1798, et seq.), the Public Records Act (California Government Code Section 6250, et seq.), California Government Code Section 11015.5, and other applicable laws pertaining to information privacy. 

Any information acquired by Alzheimer’s Disease Neuroimaging Initiative (ADNI) through the Sites is subject to the limitations set forth in the Information Practices Act. Alzheimer’s Disease Neuroimaging Initiative (ADNI) will not distribute or share electronically collected personal information (as defined in subdivision (d) of California Government Code Section 11015.5) about users to any third party without the permission of the user, except in narrow circumstances set forth in this Notice. Alzheimer’s Disease Neuroimaging Initiative (ADNI) will not sell any electronically collected personal information to any third party. Such electronically collected personal information is exempt from requests made pursuant to the California Public Records Act (Chapter 3.5 (commencing with Section 6250) of Division 7 of Title 1).

II. OUR DISCLOSURE OF PERSONAL INFORMATION

We may also share, transmit, disclose, grant access to, make available, and provide personal information with and to third parties, as follows:

  • Service Providers. We share personal information with third party contractors and service providers who perform services on our behalf, which are subject to reasonable confidentiality terms, and which may include providing web hosting services, technology support providers, customer service and email communications providers, survey providers, marketing services agencies and analytics providers, data storage providers, and administrative services.
  • Online Advertising Partners: We may also share personal information with advertising networks or permit these partners to collect information from you directly on our websites to facilitate online advertising, such as search engines and social network advertising providers to serve targeted ads to you or to groups of other users who share similar traits, such as likely demographics, on third-party platforms. For more information, including how to opt out of interest-based advertising, please see our Cookie Notice.   
  • Business Transaction or Reorganization: We may take part in or be involved in business transactions or restructurings.  We may disclose your personal information to a third-party during negotiation of, in connection with or as an assist in such a transaction. We may also disclose your information in the event of bankruptcy or insolvency.   
  • Legal Obligations and Rights: We may disclose personal information to third parties, such as legal advisors and law enforcement: 
    • in connection with the establishment, exercise, or defense of legal claims; 
    • to comply with laws or to respond to lawful requests and legal process; 
    • to protect our rights and property and the rights and property of others, including to enforce our agreements and policies;
    • to detect, suppress, or prevent fraud; 
    • to protect the health and safety of us and others; or 
    • as otherwise required by applicable law.
  • With Your Consent: We may disclose personal information about an individual to certain other third parties or publicly with their consent or direction. For example, with an individual’s consent or direction we may post their testimonial on our Sites or service-related publications. 

Alzheimer’s Disease Neuroimaging Initiative (ADNI) will not distribute or share “electronically collected personal information” (as defined in subdivision (d) of California Government Code Section 11015.5) about users to any third party without the permission of the user, except in narrow circumstances as set forth in this Privacy Notice, such as instances when authorized under law (including but not limited to the Information Practices Act), or to assist another state agency or public law enforcement organization in any case where the security of a network operated by a state agency has been, or is suspected of having been, breached. Alzheimer’s Disease Neuroimaging Initiative (ADNI) will not sell any electronically collected personal information to any third party. Such electronically collected personal information is exempt from requests made pursuant to the California Public Records Act (Chapter 3.5 (commencing with Section 6250) of Division 7 of Title 1).

III. CONTROL OVER YOUR INFORMATION

You may control your information in the following ways:

  • Email Communications Preferences.  You can stop receiving promotional email communications from us by clicking on the “unsubscribe” link provided in such communications.  You may not opt-out of service-related communications (e.g., account verification, transactional communications, changes/updates to features of the Services, technical and security notices).
  • Modifying or Deleting Your Information.  If you have any questions about reviewing, modifying, deleting, or exercising your option of having your personal information discarded without reuse or distribution (pursuant to California Government Code section 11015.5), you can contact us directly at info@adni4.org. We may not be able to modify or delete your information in all circumstances.

IV. CHILDREN’S PERSONAL INFORMATION

Our Services are not directed to, and we do not intend to, or knowingly, collect or solicit personal information from children under the age of 18. If an individual is under the age of 18, they should not use our Services or otherwise provide us with any personal information either directly or by other means. If a child under the age of 18 has provided personal information to us, we encourage the child’s parent or guardian to contact us to request that we remove the personal information from our systems. If we learn that any personal information, we collect has been provided by a child under the age of 18, we will promptly delete that personal information.

V. LINKS TO THIRD-PARTY WEBSITES OR SERVICES

Our Services may include links to third-party websites, plug-ins and applications. Except where we post, link to or expressly adopt or refer to this Privacy Notice, this Privacy Notice does not apply to, and we are not responsible for, any personal information practices of third-party websites and online services or the practices of other third parties. To learn about the personal information practices of third parties, please visit their respective privacy notices. 

VI. UPDATES TO THIS PRIVACY NOTICE

We may update this Privacy Notice from time to time. When we make changes to this Privacy Notice, we will change the date at the beginning of this Privacy Notice. If we make material changes to this Privacy Notice, we will notify individuals by email to their registered email address, by prominent posting on our Services, or through other appropriate communication channels. All changes shall be effective from the date of publication unless otherwise provided.

VII. CONTACT US

If you have any questions or requests in connection with this Privacy Notice or other privacy-related matters, please send an email to info@adni4.org.

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