Personal Data Notice and Consent

This Personal Data Notice and Consent form (“Consent Form”) describes how Informa, Pharma Intelligence, Inc. (“Informa”, “we”, “our” or “us”) may collect, use, share and transfer your personal data (i.e., data that identifies you, as a data subject) 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 or which may be of interest to you.  Such online membership communities are referred to herein collectively as the “Online Community”; and
• In connection with Informa’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 Consent Form also explains your rights as a data subject (in this Consent Form, we refer to the data subject as “you” or “data subject”).  Please carefully review the information below.

Data Subject Information

Below please fill in the data subject’s full name, address and identification details:

____________________________________

[Full name of data subject]

____________________________________

____________________________________

____________________________________

[Data subject’s address]

____________________________________

[Data subject’s passport number or other official identification number]

Data Subject Representative Information

If the data subject has a representative, please fill in the full name, address and identification details for the representative:

____________________________________

[Full name of data subject’s representative]

____________________________________

____________________________________

____________________________________

[Representative’s address]

____________________________________

[Representative’s passport number or other official identification number]

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

Informa determines the purposes and means of using your personal data.  You may contact Informa by completing our online privacy form.  Our Data Protection Officer may also be contacted at  [email protected].

The address of Informa’s office is:

Protection Officer at Informa PLC

5 Howick Place

London, SW1P 1WG, UK

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, Informa will receive your personal data.  Informa does not share your personal data with Sponsors in connection with the Online Community, but Informa does share non-identifiable aggregated data with Sponsors so that that Sponsors may send updates and communications to Online Community members who have opted to receive such communications regarding potential clinical trials which may be of interest.

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 Informa 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.

In connection with the Survey, 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 Informa’s corporate group.

If you decide that you would not like Informa 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 Sponsors may send you updates or other communications about clinical trials which may be of interest to you
• So that you may participate in the Online Community
• 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 grounds for the collection, use and sharing of your personal data?

We collect, use and share your personal data based on the following grounds and as permitted by applicable laws and regulations:

• 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 certain applicable laws and regulations, you have the right to make the requests listed below.  Regardless of whether applicable laws and regulations specifically recognize your right to make the requests noted below, Informa will review and respond to any of the following types of requests:

• Request to know 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;
• Revoke your consent to use your personal data at any time; and
• Request for your personal data to be transmitted to another person or entity.

If you would like to make any of the requests noted above, please contact us (see “How can you contact us?” below).  We will make reasonable efforts to honor your request whenever feasible and in all cases we will respond to your request as required by applicable laws and regulations.  In your request, please make clear what personal data your request relates to.

You may also contact the Russian data protection authority, the Federal Service for Supervision of Communications, Information Technologies and Mass Media (“Roscomnadzor”), with any concerns about the collection, use, or handling of your personal data.  Below are contact details for the Roscomnadzor:

Build. 2, 7, Kitaigorodskiy proezd Moscow, 109074

T +7 495 987 6800 F +7 495 987 6801

Website:  http://www.rsoc.ru/

Are you obligated to provide your personal data to Informa?

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

International Transfers of Your Personal Data

For purposes of the Online Community and the Survey, Informa intends to transfer your personal data from your country of residence to the United States.  Laws in the United States may differ from those in your country of residence and your personal data may therefore be subject to different legal protections once it is transferred to the United States.  In any event, Informa will use reasonable and appropriate measures to protect your personal data.

Term during which this Consent Form is Effective

This Consent Form will remain effective for as long as we keep your personal data (please refer to the section above titled “How long will the personal data be kept?”), or until you revoke your consent, whichever occurs sooner.

How can you contact us?

If you have any questions about this Consent Form or about the way we use your personal data, or if you would like to submit a request to us, please contact us at [email protected].

I acknowledge that I may revoke my consent at any time by contacting Informa’s Privacy team via the online privacy form and submitting a request here.