N-of-1 Project Privacy Policy


PLEASE READ THIS PRIVACY POLICY BEFORE USING THE SERVICES

The N-of-1 Project is an initiative of the Icahn School of Medicine at Mount Sinai (“MOUNT SINAI” or “we”, “us” or “our”). N-of-1 Project Studies (the “Studies”) are designed to help MOUNT SINAI and our research partners understand individual variability in treatment response. The Study and the Services are designed for users who live in the United States and are over 18 years of age.

This Privacy Policy applies to The N-of-1 Project website located at n1app.org (the “Website”) as well as to The N-of-1 Project mobile applications (the “Apps”). Collectively, the Website and Apps are referred to in this Privacy Policy as the “Services.”

BY ACCESSING OR USING THE SERVICES, YOU AGREE TO BE BOUND BY THIS PRIVACY POLICY AND THE TERMS OF USE. IF YOU DO NOT AGREE WITH THIS PRIVACY POLICY OR THE TERMS OF USE, DO NOT ACCESS OR USE THE SERVICES.

This Privacy Policy applies to the use of the Services and the information provided by and obtained from users of the Services. MOUNT SINAI maintains a separate policy in connection with the Health Portability and Accountability Act (“HIPAA”) that can be viewed here.


INFORMATION THAT WE COLLECT

Registration Data. In order to access the Services, we require that you create an account. To create an account, you must provide your email address and a password. You will also be asked to provide your name, birth year, and sex. You must affirmatively consent to participate in the Study prior to creating your account. To provide your informed consent, you will be asked to provide your first and last name, date of birth, as well as your signature.

Information That You Provide Voluntarily. In addition to the registration data described above, MOUNT SINAI collects personally identifiable information that you enter into data fields on the Website and/or Apps. For example, when you participate in Study surveys, we collect and process, with your consent, certain personal data that is necessary for the purpose of the Study. To better understand you and your evolving health, we will ask you to answer questions about your health, family, home and work.. You may choose to leave blank any questions that you do not wish to answer. Other features of the Services may ask for other personally identifiable information necessary for the proper functionality of such features. If you decline to provide certain information while using the Services, you may not be able to use or participate in some or all of the features offered through the Services. We may retain email and other communications that you send us in order to process your inquiries, respond to your requests, and improve the Services.

Usage Information That Is Automatically Collected on the Website. When you access the Website, MOUNT SINAI may collect certain generalized information without your actively providing such information. This information may include, for example, your browser type, your operating system, and your IP address. This information may be collected using various technologies including cookies, as explained below.

Usage Information That Is Automatically Collected on the Apps. When you access the Apps, MOUNT SINAI may collect certain generalized information without your actively providing such information. This information may include, for example, the type of mobile device you are using and your mobile operating system, which pages in the Apps you view, and the date and time you view them. When you access the Apps, we may assign to you a unique analytics tracking identification number (ID). MOUNT SINAI uses this ID to collect generalized information about your interaction with the Apps in order to improve your experience of the Apps. Certain Apps may also use location services to provide location-based features. If you enable location services on your device and grant permission for such Apps to access this feature, we may collect your location via GPS in order to provide you with such features.


HOW WE USE INFORMATION THAT WE COLLECT

General Terms

MOUNT SINAI will only use your personal data as specifically set forth in this Privacy Policy, and we will not otherwise sell, rent, lease, give away, disclose or share your data or contact information without your consent.

MOUNT SINAI uses the personally identifiable information that it collects to ensure the proper functionality of the Services across various devices, to process user inquiries and respond to user requests, to analyze usage trends, to improve the Services, and to develop new Services.

MOUNT SINAI may provide your personal data to third parties if you consent to us doing so. We may also provide personal data when we work with third parties who provide services on our behalf, provided that we take steps to limit the personal data provided to them to that which is reasonably necessary for them to perform their functions for the allowable purposes listed above. We require these service providers by contract to agree to only process the personal data in accordance with our instructions and to maintain the security and confidentiality of such information by applying adequate technical and organizational measures.

MOUNT SINAI uses standard log files and other automatically-collected usage data that is essential for the Services to function effectively, including to: (i) personalize the Services, such as by remembering information so that it does not need to be re-entered; (ii) monitor and analyze the Services; (iii) monitor aggregate usage metrics; and (iv) track your activities in the Services.

MOUNT SINAI employs a variety of online security measures to safeguard and keep your information private.

MOUNT SINAI processes personally identifiable information only for the purposes for which it was collected and in accordance with this Privacy Policy.

When you download and access the Apps, MOUNT SINAI may send you push notifications to alert you of important information. If you no longer wish to receive such communications from us, you may disable them at the mobile device level.

Study Data

During the Study, data pertaining to your participation will be generated and recorded. We refer to such data as your “Study Data.” We will store your Study Data attached to a Study ID code that is unique to you. We will separate your account information (e.g., full name and contact information) from your coded Study Data, and limit the circumstances when they are stored together.

We limit the access of your Study Data. Only the following entities and organizations may use your Study Data by default:

- you

- the MOUNT SINAI Study team, including other people who, and organizations that, assist the Study team; and

- the ethics committee or institutional review board that approved the Study;

-     regulatory agencies and government officials who have a duty to monitor or oversee studies like this one.

Your coded Study Data will be combined with those of other Study participants. The combined data will be stored in our secure computational research platform for analysis. We refer to our computational research platforms as “Data Platforms.” Researchers from the Study team and its partners accessing data through Data Platforms will analyze the data and report findings back through blog or scientific publications. The Study may give you the option to share your coded Study Data more broadly, with other researchers worldwide, for use in this research and beyond to benefit future scientific research.

If data, results, or other information from the Study is published or presented at scientific meetings, your name will not be used without your permission.

In limited circumstances, your confidential account information may be shared with the Institutional Review Board that oversees the Study, or others, such as law enforcement, if required by law (for example, to prevent possible injury to yourself or others).

COOKIES

MOUNT SINAI may place small data files, called "cookies," on your computer or other device. Cookies are a standard web technology that allow us to both store and retrieve login information on a user's system. These cookies automatically identify your browser to our server whenever you interact with a service provided on the Services. Cookies can store your preferences via a password you select to access a website. Cookies also help us review website traffic patterns and improve the Website. Most browsers automatically accept cookies, but you usually can change your browser setting to prevent the acceptance of cookies, although this may prevent you from using some of the features of the Services. It is important to note that information collected through cookies is not linked to any personally identifiable information.

THIRD-PARTY WEBSITES

In order to provide you with other valuable information, MOUNT SINAI may provide links to third-party websites outside the MOUNT SINAI Health System network. MOUNT SINAI exercises no authority over, and does not necessarily endorse, such third-party websites.

These destination links are provided only for your convenience and, as such, you access them at your own risk. However, MOUNT SINAI wishes to assure the integrity of the Services and their destination links, so any comments pertaining to the Services or any websites accessed through our links are greatly appreciated. Comments can be submitted to info@n1app.org.

LEGAL MATTERS

MOUNT SINAI reserves the right to comply with the law and to release personally identifiable information relating to any user of the Services (i) if we reasonably believe that the user is in violation of our Terms of Use or other published guidelines or is engaged in illegal activity, (ii) to release information in response to court and governmental orders, other enforceable requests from government entities, civil subpoenas, discovery requests and otherwise as required by law, (iii) if we reasonably believe that such release is required to protect the rights, property, safety or security of any of our users or the public, or (iv) to respond to an emergency.

CHILDREN’S PRIVACY

The Services are not intended for use by children under the age of 18. In accordance with the Children's Online Privacy Protection Act of 1998 (COPPA), MOUNT SINAI does not knowingly request personally identifiable information from anyone under the age of 13 without parental consent. When we do receive information (with parental consent) from users under the age of 13, we will not share their personally identifiable information with third parties, regardless of their stated preference given at registration, in compliance with COPPA.

CHANGES TO PRIVACY POLICY

MOUNT SINAI may change this Privacy Policy from time to time. We encourage you to check this page for any changes to the Privacy Policy and for new versions thereof. By continuing to access, browse, and/or use the Services, you agree to accept any posted revised terms.

CONTACT

If you have any questions, comments or requests regarding this privacy policy or our processing of your information, please contact: info@n1app.org.

 

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