Personal Data Notice and Consent

This Personal Data Notice and Consent form describes how Citeline, Inc. (“Citeline”, “we”, “our” or “us”) may collect, use, share and transfer your personal data (i.e., data that identifies you) in the following circumstances:

• In connection with your participation in online membership communities on our sites that allow you to submit personal data to us, and receive information and updates from clinical research sponsors (“Sponsors”) regarding;
  • potential clinical trials for which you may qualify
  • information about Sponsors’ and/or other parties’ research initiatives and education materials
  • program opportunities offered by Sponsors (including but not limited to opportunities to participate in Sponsors’ health, wellness and engagement programs)
  • questionnaires regarding your feedback on Sponsors’ programs, studies, initiatives and other outreach so that Sponsors may improve their existing products and services and develop new products, initiatives, programs, features and functionalities

Such online membership communities are referred to herein collectively as the “Online Community”

• In connection with Citeline’s Connect platform on which you may complete an online questionnaire which asks you various questions related to your health, such as various health conditions you may have, medications you may be taking or have taken in the past and/or other relevant information (such questionnaire referred to herein as the “Survey”). The purpose of the Survey is to determine if you may qualify for certain clinical studies (“Studies”).

This document also explains your rights under the General Data Protection Regulation (“GDPR”) (which is applicable if you are located in the European Union (EU)) and the UK General Data Protection Regulation (“UK GPDR”) (which is applicable if you are located in the United Kingdom (UK)). Please carefully review the information below.

Who determines the purposes and means of using your personal data?

Citeline determines the purposes and means of using your personal data. You may contact Citeline by emailing our Privacy Team at [email protected].

To contact our Privacy Team or representative in the European Union, please email [email protected].

What personal data is collected?

The following personal data is collected as part of your participation in the Online Community:

• Your basic contact information (including name, email address, postcode and phone number)
• Your date of birth
• Your gender
• Data about your location
• Your demographic information (e.g., data on race/ethnicity

The following personal data is collected as part of the Survey:

• Your basic contact information (including name, email address, postcode and phone number)
• Your date of birth
• Your gender
• Data about your location
• Your demographic information (e.g., data on race/ethnicity)
• Your preference regarding Study locations, which may include hospitals and medical institutions (“Sites”)
• Data concerning your health, such as health conditions you may have and medications you may be taking or have taken

With whom is personal data shared? 

In connection with the Online Community, Citeline will process your personal data. Citeline does not share your personal data with Sponsors in connection with the Online Community. Citeline does share non-identifiable aggregated data with Sponsors so that they may send communications to the Online Community members who have opted to receive such communications as outlined at the top of this notice. You may opt out of the Online Community marketing communications at any time by following the link in the footer of any marketing email you receive.

In connection with the Survey, if your responses to the Survey indicate you are a potential candidate for a Study and you would like to be considered for the Study, you will have the option to provide your contact information and share your Survey answers with Citeline and with various Sites. If you elect to share your personal data with a Site and are contacted directly by a Site, you will receive the name of the Sponsor of the Study for which you are being considered and the Sponsor’s contact details. Please note that the Sponsor is an organization which separately determines purposes and means of collecting, using and sharing your personal data; as such, the Sponsor may provide you with its own personal data notice, which may include information regarding its data protection officer and how to contact that person.

We also share your personal data:

• with third parties who assist us in providing our products and services and administering our business, such as IT and marketing technology host suppliers, web and data hosting providers, mailing houses, ad servers, sales platform providers and communication tool providers; and
• with companies that are part of Citeline’s corporate group.

If you decide that you would not like Citeline to share any of your personal data in connection with the Survey, simply exit the Survey without submitting it. We will retain certain responses, but this data is anonymous.

Why is this personal data collected, used and shared?

In connection with the Online Community, personal data is collected, used and shared for the following reasons:

• So that you may receive communication as part of the Online Community as listed at the top of this notice
• For operational purposes, including to allow us to review the quality of our services and evaluate the performance of our staff
• As needed for the establishment, exercise or defense of legal claims
• As otherwise required by applicable laws

In connection with the Survey, personal data is collected, used and shared for the following reasons:

• To determine if you may qualify for certain Studies
• So that Sites may contact you directly regarding enrolling in certain Studies (*please note, however, that you are not agreeing to participate in any Study through this Personal Data Notice and Consent form)
• To verify which Studies you enroll in
• To contact you about additional Study recruitment opportunities
• For operational purposes, including for operating our Connect platform and to allow us to review the quality of our services and evaluate the performance of our staff
• To share your enrollment status with recruitment partners through which you were referred, so those recruitment partners can avoid reaching out to you again if you have already enrolled in a Study
• As needed for the establishment, exercise or defense of legal claims
• As otherwise required by applicable laws

How long will the personal data be kept?

In connection with the Online Community, your personal data will be kept by us for as long as you participate in the Online Community, unless we need to retain your personal data for a longer period to meet our legal requirements or to defend or exercise our legal rights. In these cases, we will retain your personal data only for the period necessary for us to pursue the relevant purpose.

In connection with the Survey, your personal data (should you choose to provide it to us) will be kept by us for 12 months from collection of the personal data from you, unless we need to retain your personal data for a longer period to meet our legal requirements or to defend or exercise our legal rights. In these cases, we will retain your personal data only for the period necessary for us to pursue the relevant purpose.

What are the legal bases for the collection, use and sharing of your personal data?

Our legal bases for collecting, using and sharing your personal data are as follows:

• Your consent;
• Compliance with legal obligations to which we are subject; and
• The establishment, exercise or defense of legal claims

What are your rights?

Under the GDPR and UK GDPR, you have the right to:

• Ask questions about how we handle your personal data;
• Request to access, correct, or update your personal data, request to limit the use of your personal data, or object to the use of your personal data;
• Request that your personal data be deleted;
• Withdraw your consent to use your personal data, without affecting the previous use of personal data (before you withdrew your consent); and
• Ask for your personal data to be transmitted to another person or entity.

If you would like to exercise any of the above rights, please contact us (see “How can you contact us?” below). We will respond to your request as required by law. In your request, please make clear what personal data your request relates to.

You also have a right to lodge a complaint with a data protection authority in your country of residence. If you are located within the EU, you can access a list of national data protection authorities in the EU and their contact information here: https://edpb.europa.eu/about-edpb/about-edpb/members_en. If you are located in the UK, you may lodge a complaint with the UK’s data protection authority, the Information Commissioner’s Office (ICO), here: https://ico.org.uk/make-a-complaint/.

Are you obligated to provide your personal data to Citeline?

You are not obligated to provide Citeline with your personal data, however, if you choose not to provide Citeline with your personal data this will mean that you cannot participate in the Online Community, receive information about Studies or be connected to Sites by Citeline for potential participation in Studies.

Cross-Border Transfers of Your Personal Data

For purposes of the Online Community and the Survey, Citeline intends to transfer your personal data from the European Union and United Kingdom to the United States. Neither the European Commission nor the United Kingdom has determined that the laws in the United States provide an adequate level of protection of personal data. Your personal data may therefore be at greater risk once it is transferred to the United States due to this absence of a determination of an adequate level of protection and lack of safeguards to protect personal data. Despite the foregoing, Citeline will take reasonable and appropriate measures to protect your personal data.

How can you contact us?

If you have any questions about this Personal Data Notice and Consent or about the way we use your personal data, or if you would like to exercise any of your rights, please contact us at [email protected].

I acknowledge that I may withdraw my consent at any time by contacting Citeline’s Privacy team at [email protected].