Personal data notice and consent

Introduction

This Personal Data Notice and Consent form describes how Clinrol Pty Ltd. (“Clinrol”, “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 Clinrol’s platforms 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 as a data subject. Please carefully review the information below.

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

Clinrol determines the purposes and means of using your personal data. You may contact Clinrol by emailing info@clinrol.com.

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, Clinrol will process your personal data. Clinrol does not share your personal data with Sponsors in connection with the Online Community. Clinrol does share non-identifiable aggregated data with Sponsors so that they may send communications to 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 Clinrol 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.

  • 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
  • Clinrol's other clinical trial recruitment partners

If you decide that you would not like Clinrol 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 the 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
  • 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
  • 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 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 connection with the Survey, your personal data (should you choose to provide it to us) will be kept by us for 24 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.

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

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

Information about our compliance with Australian Privacy Principles

You may find our policy about compliance with Australian Privacy Principles (“APPs”) here: (“APP Policy”). Our APP Policy describes the following:

Request for Access and Correction

If you would like to make a request for access to your personal data or correction of your personal data, 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 Australia’s data protection authority, the Office of the Australian Information Commissioner (OAIC), with any concerns about the collection, use, or handling of your personal data. You may find information about lodging a complaint with the OAIC here: https://www.oaic.gov.au/privacy/privacy-complaints/.

  • Types of personal data we collect and hold
  • Sources from which we collect personal data
  • How we store personal data
  • How we protect the security of personal data and manage risks relating to the use of personal data
  • Purposes for which we collect, hold, and use personal data
  • How individuals may seek access to or correction of their personal data
  • How individuals may complain if Clinrol or one of its contractors breach the APPs and our process for handling complaints
  • Information about our disclosures of personal data to overseas recipients

Are you obligated to provide your personal data to Clinrol?

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

How can you contact us?

If you have any question about this Personal Data Notice and Consent or about the way we use your personal data, or if you would like to submit a request to us, please contact at info@clinrol.com.

I may withdraw my consent at any time by contacting Clinrol's Privacy team by emailing info@clinrol.com.

US Appendix

This Appendix supplements the information provided in the Personal Data Notice and Consent form and applies to individuals who reside in the US.

You have the right to request

You have the right to request that Clinrol disclose to you what information it collects, uses, discloses, shares (for cross-context behavioral advertising) and sells. You also have the right to request that a business delete any personal information about you which the business has collected about you.

Please note for your protection, any request sent to Clinrol will be subject to the following verification procedure requiring you to provide sufficient information that allows us to reasonably identify you are the person about whom we collected personal information including details of products/services you have previously received from us and also we will ask you to provide some evidence that you are a California resident (e.g., utility bill).

We reserve the right to deny your request if we cannot verify your identity. Where we deny your request in whole or in part, we will endeavor to inform you of the denial, provide an explanation of our actions, and provide the reasons for the denial.

All states, except California

In some states you have certain rights pertaining to your personal information, including but not limited to the following:

  • The right to delete your personal information
  • The right to opt out the sale and/or certain types of uses of your personal information
  • Right to access your personal information
  • The right to not be discriminated against for exercising your privacy rights under applicable state laws

If you wish to exercise any such rights, you may contact Clinrol’s Privacy team at info@clinrol.com. We will respond to you as required under applicable state laws and regulations.

California

Where California privacy laws apply (if you are a consumer resident in California and where Clinrol meets the relevant threshold tests) the following additional provisions apply:

  • To request access to the personal information we have about you
  • To request that we delete personal information about you
  • To request that we correct personal information about you which is inaccurate
  • To opt-out of the sale or sharing (for cross-context behavioral advertising purposes) of personal information about you
  • Not to be discriminated against based upon whether you decide to opt-out or exercise any of your other rights under California law

To exercise the access, deletion, correction and/or opt-out rights described above, please submit a verifiable consumer request to us by emailing us.

Opt-Out of Sale or Sharing of Personal Information

You have the right to direct Clinrol to not sell or share your personal information. To exercise this right to opt-out of the sale or sharing of personal information, please click here: Do Not Sell My Personal Information.

Clinrol will not discriminate against you for exercising any of your above rights. Please note we may, as permitted by law, continue to communicate with you directly and send you information about your product/service and promotional materials that may be relevant to you.

Designating an Authorized Agent

You may designate an authorized agent to make a request to exercise your rights on your behalf. Your authorized agent must be able to provide to Clinrol proof that you have authorized the agent to act on your behalf.

For your protection, we reserve the right to deny any request from an agent who does not submit proof that they have been authorized to act on your behalf.

Response Timeline

We endeavor to respond to a verifiable consumer request within forty-five (45) days of its receipt. If we require more time (up to 90 days), we will inform you of the reason and extension period in writing.

We do not charge a fee to process or respond to your verifiable consumer request unless it is excessive, repetitive, or manifestly unfounded. If we determine that the request warrants a fee, we will tell you why we made that decision and provide you with a cost estimate before completing your request.

Other California Privacy Rights

California's 'Shine the Light' law (Civil Code Section § 1798.83) permits users of our website that are California residents to request certain information regarding our disclosure of personal information to third parties for their direct marketing purposes. To make such a request, please send an email to info@clinrol.com.