The RECOVER Studies website is a tool of the RECOVER Initiative. It is not for medical care, advice, or treatment.
Website Privacy Policy
The RECOVER Studies website (studies.recovercovid.org) is a tool for the RECOVER Initiative. RECOVER (“we” or “us”) is a research initiative funded by the National Institutes of Health (NIH).
This Privacy Policy says what information we will collect through the RECOVER Studies website. It also says what we will do with this data.
By visiting the RECOVER Studies website, you agree to this Privacy Policy.
Data We Collect
When you visit the RECOVER Studies website, we collect information about the way you use the website. Here is a list of the information we may collect:
- The date and time of your visit to the RECOVER Studies website.
- The pages you visit on the RECOVER Studies website.
- The time you spend on each page.
- Your actions on each page. For example, if you click a button on the page.
- The type of device you use to visit our website. For example, are you using a tablet or mobile phone?
- Your device’s IP (internet protocol) address. An IP address is a string of numbers that identifies a device on the internet. It does not identify the person using the device.
- Your device’s operating system. For example, many PCs use the Windows operating system. Many Apple mobile devices use a version of iOS.
- The browser you use to visit the RECOVER Studies website.
- Personal information to include, but not limited to: age, COVID status, contact information such as your phone number and/or email address, and location.
We use tags, beacons, and cookies to keep an eye on RECOVER Studies website traffic. They tell us things like how people get to our website and if they have visited before.
We also ask web service providers to tell us about RECOVER Studies website traffic. Web service providers, like the company TrialX (iConnect), are the companies that securely collect and store the data identified above, as well as the Google Analytics platform.
RECOVER may ask you to share your health data from wearable devices such as Fitbit, mobile applications, or data collected on your personal device, such as Apple HealthKit. In addition, we may ask you to share your EHR data from your health provider. RECOVER will store and use this data in support of healthcare research. After sharing you may elect to stop sharing this data if you choose.
It is important to note that we collect limited personal and health information, which helps us determine eligibility. If you join a RECOVER study, the website may link you to other platforms for you to take health surveys. We will tell you any time we are collecting study data through the website. You will have the choice to participate or not.
How We Use Data
We will use the data we collect through the RECOVER Studies website:
- For research.
- For security.
- To return search results when looking for enrollment sites using the “Find a site near you” function.
- To make sure the website works the way it is intended to do so.
- To improve the website.
- To make the website easier to use. For example, we will keep information you have entered so it does not need to be re-entered.
- To contact you by email, telephone calls, SMS, or other equivalent forms of electronic communication, such as a mobile notification of informative communications related to the functionalities, products or contracted services, including the security updates, when necessary or reasonable for their implementation.
If you give us your contact information, we may use it to get in touch with you. Some examples of why we might contact you are to give you technical support or to tell you what’s new with RECOVER. We will NOT sell your data or contact information.
How We Protect Your Privacy
Your privacy is important to us. Here are some of the steps we will take to protect your privacy.
- Access for users to ensure relevant study staff only sees information necessary for the study.
- Manage security and maintain privacy at every level and monitor change and access centrally in real-time.
- Research Cloud keeps this research compliant with requirements including HIPAA, NIST, FISMA, FIPS, SOC 1 and 2 Type II, PCI DSS, and FedRAMP (medium).
- Data we have about you will be stored on protected computers. We will limit and track who can see this data.
- We will limit who is allowed to see information that could directly identify you, like your name or other information.
- We have a Certificate of Confidentiality from the U.S. Government. This Certificate may help us keep your data private. For example, it may help us fight requests for data from law enforcement.
- We will tell you if there is a serious data breach.
When and Why We Disclose Data
We will disclose (give out) data that we collect through the RECOVER Studies website only for the reasons we list here. Other than these reasons, we will not sell, rent, lease, give, or share your data without your permission.
Reasons we disclose data:
- For research. The purpose of the RECOVER Initiative is to help understand, prevent, and treat PASC (Post-Acute-Sequelae of SARS-CoV-2 infection). Study data we collect through the website will be stored in the RECOVER research database which will be used for their studies.
- To service providers. If we work with a service provider, we will give them any data they need to do the job we have asked them to do. A service provider is someone who is helping us with a part of RECOVER. The service provider will have to sign a contract promising to use the data only for the job they are doing for us. Also, they will promise to keep the data safe and not re-share outside their organization.
- For legal reasons. We may give out data if we are required to by law. Otherwise, we will not give out data in any civil, criminal, administrative, legislative, or other proceedings. In cases where the law says we are required to give out data, we will try to give out as little data as possible. We will try to protect your privacy as much as we can. Whenever possible, we will tell you if we have to give out data.
Do Not Track
If you do not want us to track your use of the RECOVER Studies website, you can use ad blockers or Do Not Track preferences in your browser.
Data Security
RECOVER implements policies, standards, and procedures which are consistent with government-wide laws and regulations, to assure an adequate level of protection for IT systems whether maintained in-house or commercially.
How Long Will We Keep Your Data?
We may keep a backup of all the data we collect from you. We need to keep backups and archives for disaster recovery purposes. However, these backups are synchronized with information in real-time, so they are updated every time there is an addition or deletion of your information.
Your Rights and Choices
You have rights and choices about your data. For example, if there is an error in the data we collect from you, you have the right to ask us to fix it. You can call us at 833.422.6819 or email us at RECOVER_CSC@nyulangone.org.
You can stop using the website at any time. This is not the same as withdrawing from the RECOVER Initiative. If you want to withdraw, you can call us at 833.422.6819 or email us at RECOVER_CSC@nyulangone.org.
We may keep a copy of all the data we collect from you. This is because we have a responsibility to keep backups and archives.
If you have questions about your rights and choices or would like more information about your rights and choices, call us at 833.422.6819 or email us at RECOVER_CSC@nyulangone.org.
Cross-Border Transfer of Your Data
You can visit the website and take part in RECOVER when you are not in the United States. If you do so, we may transfer your data to the United States. If you visit the website or take part in RECOVER, you consent to the transfer of your data.
We may transfer your data to countries where you do not live. These countries may have different laws about protecting data than the country where you live. If we transfer your data, we will follow all the laws about transferring data for any country where the data will go. This means that privacy protections are different than in the U.S.
Updates to this Privacy Policy
We may update this Privacy Policy. We will post updates on this website. If we make big changes, we will try to tell you directly. For example, we may send you an email or put a pop-up message on the website. If you visit the website or take part in RECOVER, it means you agree to the updated Privacy Policy.
Contact
If you have any questions, comments or requests, please contact us at RECOVER_CSC@nyulangone.org or by calling 833.422.6819.