The Regents of the University of California, San Francisco (“UCSF”) and The PRIDE (Population Research in Identity and Disparities for Equality) Study Research Team (collectively known as the “Research Team”) know that you care about how your information is used and shared. The Research Team takes protecting your privacy very seriously. Please read the following to learn more about how the Research Team uses and protects information collected through The PRIDE Study and its website pridestudy.org (the “Site”).
Your use of the Site will allow you to provide the Research Team with Personal Information, which may include but is not limited to information about your identity and other demographic information, your medical conditions, prior surgeries, your medications, and answers to health and well-being-related surveys. The Site collects your Personal Information for the purposes of a research study being conducted at UCSF called the “The PRIDE (Population Research in Identity and Disparities for Equality) Study” (the “Study”). If you choose to use the Site to provide the Research Team with any Personal Information, you must first review and acknowledge the informed consent form for the Study, which will be presented to you within the Site.
The Research Team does not knowingly collect or solicit Personal Information from anyone under the age of 18 or knowingly allow such persons to register for The PRIDE Study. If you are under 18, you are not allowed to register for the Study. In the event that the Research Team learns that the Research Team has collected Personal Information from a person under age 18, the Research Team will delete that information. If you believe that the Research Team might have any information from or about a person under the age of 18, please contact the Research Team at email@example.com or 855-421-9991 (toll-free).
How does The PRIDE Study Site collect information?
The Site will obtain information from you in two ways. The first is information that you manually enter into the Site. The second is information that the Site collects automatically about you.
Information you manually enter into the Site:
The Research Team receives and stores information you manually enter into the Site. For example, the Research Team collects Personal Information that directly identifies you, including your name, email address, and birth date. The Research Team collect this information to verify (i) your identity, (ii) that you reside within the United States or US Territories, (iii) that you are at least 18 years of age, and (iv) so that the Research Team can contact you. In addition to these direct identifiers, the Research Team asks you to enter information including, but not limited to, gender identity, sexual orientation, education level, weight, height, annual income, race, ethnicity, health insurance status, United States Armed Services affiliation, etc. Additionally, the Research Team may ask about your health, your healthcare experiences, etc. You are free to respond to whichever questions you wish and decline to do so for those questions you do not wish to respond, with the understanding that the Study benefits the most when you share the most information that feels comfortable/appropriate for you.
Information collected automatically:
In addition to the Personal Information that you manually enter, the Site can also collect certain Personal Information about you automatically through any sensor that you may choose to share with the Study. For example, if you have confirmed your consent to do so in “My Devices” section of the Site, the Site can interface with your wearable device’s sensors (accelerometers, gyroscope, barometer, etc.) to collect your physical activity. These data will be automatically uploaded to the site.
This Site may also automatically receive technical information relating to your usage of the Site such as your operating system, device, features used, content viewed and downloaded, the dates and times of your interactions with the Site and other information. The Research Team may use this information to understand, customize, and improve user experience with the Site and the Study.
Is Personal Information about me secure?
All information that is collected through the Site will be sent to a secure data server run by Amazon Web Services. The PRIDE Study currently utilizes 256-bit secure socket layer (SSL) protocol which protects all data transmission sent between our servers, Amazon Web Services, and the Site. Amazon Web Services’ security practices have been reviewed to meet privacy and security standards set by UCSF.
The direct identifiers will be encrypted and stored separately from your survey data. UCSF researchers will, however, maintain your consent and personal information and retain the ability to re-identify the information for research or legal purposes, and they may share re-identified information with others at UCSF who need to see such information to ensure that the research meets legal, regulatory, or institutional requirements.
The Research Team endeavors to protect the privacy of the Personal Information that the Research Team holds in its records, but cannot guarantee complete security. Unauthorized entry or use, hardware or software failure, and other factors, may compromise the security of your Personal Information at any time.
Please note that all information collected by the Site will be processed in the United States, and this may be done by another entity under contract with UCSF. During the Study, only UCSF and its sub-contractors engaged by UCSF will be able to compile data you generate or provide through or with the Site. You should only transmit data for the Study if you are in the United States and US territories at the time you transmit such data. If you transmit data for the Study while you are outside of the United States and US territories, then laws in the United States and US territories may not protect your privacy to the same extent as the laws in the country from which you have transmitted data to the Site. For this reason, we strongly discourage you from transmitting data when you are outside the United States and US territories, and in that regard you must know that you may not have the same privacy protections as when you transmit data within the United States.
Will UCSF share any of the information it receives?
As part of your participation in the Study, and per your informed consent form for the Study, the Research Team may share your coded study data (data without personal identifiers) with researchers outside of UCSF under criteria established by UCSF.
The information collected by the Site will not be shared with or sold for advertising purposes.
The Research Team reserves the right to disclose information collected through the Site as required by law, when the Research Team believes disclosure is necessary to comply with a regulatory requirement, judicial proceeding, court order, or legal process served on us. The Research Team may also be required by law to disclose information to protect the safety, rights, or property of UCSF or the public.
What Personal Information can I access?
Through the Site, you may access, and in some cases, edit or delete the following information you’ve provided to us: name and password email address, user profile information, including your height, weight, demographic information, and health information.
When you update or delete information, however, the Research Team may maintain a copy of the unrevised information in our records to track the data entry into the Study and to assure the integrity of the Study. The information you can view and update may change as the Site undergoes further development. Please note that any information that is automatically uploaded from the Site cannot later be changed or updated. If you have any questions about viewing or updating information that the Research Team has on file about you, please contact us at firstname.lastname@example.org or 855-421-9991 (toll-free).
What choices do I have?
You may be able to add, update, or delete certain information as explained above. When you update or delete information, the Research Team may maintain a copy of the unrevised information in our records.
The Research Team may use your Personal Information to contact you to ask if you would be willing to participate in additional research opportunities, including linking your participant data with other health data. If you are interested, we will obtain your consent before enrolling you in the research study and linking your data with your other health data.
What limitations are there on my use of the Site?
When you register for the Study, you choose a unique username and password to visit the Site solely for your personal, non-commercial use in connection with the Study. By visiting the Site, you agree that you will not do anything to interfere with or disrupt the operation of the Site, you agree that you will provide only accurate and current information through the Site, and you agree that you will not impersonate anyone else in your use of the Site. You further agree not to transmit content that you do not have the right to transmit or that infringes the rights of any party, and you agree to use the Site in compliance with all applicable laws and regulations. You understand that the Site or portions of it may be subject to patent, copyright, trademark and other intellectual property protections and that the ownership of software and other intellectual property related to the Site, as well the goodwill associated therewith, remains with UCSF or its licensors. You agree that any improvements or other changes to the Site or the Study itself are the sole property of UCSF.
Questions or concerns?
You understand and agree that nothing accessed through this Site constitutes professional medical advice. UCSF disclaims any representation or warranty, expressed or implied, concerning the accuracy or completeness of the information contained on the Site. In no event shall UCSF be liable for any special, indirect or consequential damages or damages of any kind whatsoever, resulting from or arising out of or in connection with the use of this Site.
UCSF and The University of California, San Francisco are trademarks of The Regents of the University of California, San Francisco or its licensors.