Information Release Notice

This notice and consent form (Notice) provides you with information on how Citeline (Citeline, we or us), will process your child's personal data in connection with our Connect platform. The online questionnaire (Survey) will ask you various questions related to your child's health such as:

• various health conditions your child may have;
• medications your child may be taking or have taken in the past; and/or
• other relevant information.

We ask these questions to see if your child may qualify for clinical studies (Studies) being conducted by pharmaceutical companies and medical research organisations (Sponsors).

If your responses to the Survey on behalf of your child indicate your child is a potential candidate for a Study, you will have the option to provide your contact information and share your answers to the Survey for review and follow-up.

If at the end of the Survey, you decide that you would not like us to share any identifiable information about your child, simply exit the Survey without submitting the Survey. We will retain certain responses, but this data is anonymised and your child will not be identifiable from the information we collect.

If at the end of the Survey, you would like your child to be considered for a Study, we will ask you to provide your consent to Citeline collecting and sharing your child's information provided in the Survey with various Study locations, which may include hospitals and medical institutions (Sites). These Sites will use the personal data you provide to determine if your child is a candidate for the Study and will contact you directly regarding your child enrolling in the Study.

You are not agreeing to have your child participate in a clinical study through this Notice.

Privacy Notice

1. Data controller and contact details

   For the purposes of data protection laws, Citeline is a data controller.

   The Sponsor is also a data controller. The Sponsor is the pharmaceutical company or medical research organisation conducting the Study. You will receive the name of the Sponsor and its contact details if you are contacted directly by a Site or patient recruitment agency regarding enrolling in the Study. At this time, the Sponsor will also provide its data privacy notice, including information regarding its data protection officer and how to contact that person (which may be via the Site where the Study is taking place).

   For any questions about this Privacy Notice, please contact our Data Protection Officer at Informa Plc, 5 Howick Place, London, SW1P 1WG, or you can contact our Privacy team by submitting a request here.

2. Purposes of processing your child's data

   We will use your child's personal data to provide you with information about recruitment opportunities for Studies. In providing you with these opportunities and this information, Citeline may also need to share your child's personal data with the Site where the Study is taking place. Citeline may also process, transfer and disclose your child's personal data for the following additional purposes and to the following additional recipients:

   • to create a patient record for your child to allow us to identify appropriate opportunities;
   • to determine whether your child potentially qualify for a particular Study;
   • to allow the Site to contact you regarding a Study for which your child may qualify;
   • to verify which Studies your child enrolls in;
   • to contact you about additional Study recruitment opportunities;
   • for operational purposes, including to allow us to review the quality of our services and evaluate the performance of our staff;
   • to share your child's enrolment status with recruitment partners through which your child was referred, so those recruitment partners can avoid reaching out to you again if have already enrolled on a Study; and
   • as otherwise required by applicable laws.

   Citeline will also provide certain de-identified data to Sponsors. This data will not contain your child's name, address or any other information that directly identifies you or your child.

3. Legal basis for the processing
   Citeline may process your child's personal data to comply with applicable laws and regulations. Our legal basis for this is compliance with a legal obligation to which we are subject, and the establishment, exercise or defence of legal claims (in accordance with Article 6 and Article 9 of the GDPR). The legal basis for all of our other processing of your child's personal data is your explicit consent (in accordance with Article 6 and Article 9 of the GDPR).
4. The categories of personal data concerned
   Citeline process the following categories of your child's personal data:

   • your child's name;
   • your contact information (including email address, postcode and phone number);
   • your child's date of birth;
   • your Site preference for the Study;
   • your child's gender; and
   • various health data, which may include information about your child's health condition and medication history.
5. The recipients or categories of recipients of the personal data
   For the purposes set out above, Citeline will transfer your child's personal data to the following recipients:

   • the Site where the Study is taking place;
   • any recruitment partner through which you were referred (where applicable);
   • third parties who assist in providing our products and services and administering our business. These include IT and marketing technology host suppliers, web and data hosting providers, mailing houses, ad servers, sales platform providers and communication tool providers; and
   • companies that are part of Informa’s corporate group.

   We only share your child's personal data with third parties if and to the extent it is necessary for them to provide our services related to the Connect Platform to you.

6. Transfers of your child's personal data

   Citeline will process your child's personal data in the United States. The data protection laws of the United States may not be equivalent to those in your country of residence.

   However, we take steps to ensure that your child's personal data continues to be treated in accordance with this Notice and applicable data protection laws, regardless of where your child's personal data are processed. Where relevant, we enter into EU standard contractual clauses (or equivalent measures) with the party outside the EEA receiving the personal data. A copy of the relevant standard contractual clauses is available upon request.

7. The period for which the personal data will be stored

   We will only retain your child's personal data for 12 months from collection of the data from you, unless we need to retain your child's 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 child's personal data only for the period necessary for us to pursue the relevant purpose. Where required by local laws, your child's data will be blocked during this period.

   When we no longer need to use your child's information, we will remove it from our systems and records and / or take steps to promptly anonymise it so that you can no longer be identified from it.

8. Your rights to access, rectify, restrict or delete your child's personal data, and withdraw your consent

   Data protection laws provide various rights for individuals in relation to their personal data. These rights are subject to certain limitations. To make a request you can contact Informa’s Privacy team via our online privacy form and submitting a request here. These rights include:

   • Access. You have the right to request a copy of the personal data we are processing about your child, which we will provide back to you in electronic form. This right may be subject to certain limitations in your country.
   • Rectification. You have the right to have incomplete or inaccurate personal data that we process about you rectified.
   • Deletion. You have the right to request that we delete personal data that we process about you. However, this right does not apply in certain circumstances, such as if we need to retain such data in order to comply with a legal obligation or to establish, exercise or defend legal claims.
   • Restriction. You have the right to request that we restrict our processing of your child's personal data where you believe such data to be inaccurate, our processing is unlawful or that we no longer need to process such data for a particular purpose. Where we are not able to delete the data due to a legal or other obligation or because you do not wish for us to delete it, we would take steps to restrict the processing of this data.
   • Portability. You have the right to obtain personal data we hold about you, in a structured, electronic format, and to transmit such data to another data controller in certain circumstances, including where this is personal data which you have provided to us and if we are processing that data on the basis of your consent.
   • Withdrawing Consent. Where we process personal data on the basis of your consent, you have the right to withdraw your consent. This withdrawal will not affect the lawfulness of our processing prior to any withdrawal.
   • Processing of your child's personal data after your child's death. In some countries such as France, you have the right to provide (directly to us or to a trusted third party) guidelines regarding the processing of your child's personal data after your child's death.

   As mentioned above, the Sponsor is also a data controller. You will receive the name of the Sponsor and its contact details if you are contacted directly by a Site or patient recruitment agency regarding enrolling in the Study. At this time, the Sponsor will also provide its data privacy notice, including information about how to exercise your rights as against the Sponsor.

9. The right to lodge a complaint with a supervisory authority
   You have the right to file data protection complaints with your national (or in some countries, regional) data protection authority.
10. Absence of statutory or contractual requirement to provide any personal data
    There is no statutory or contractual requirement or other obligation to provide any personal data, but failing to do so means that you will not be able to receive information about the Studies or be connected to Sites by Citeline for potential participation in the Studies.

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