This 'MyRealWorld® CF' website was developed by Vitaccess Limited ("Vitaccess", "we" or "us") on behalf of Vertex Pharmaceuticals Incorporated ("Vertex") for the conduct of an online survey research study (“Study”) of patients living with cystic fibrosis (“CF”). This website describes the ways in which we collect, use, and share the personal information of you or your child (“Personal Information”) that you provide through this website.
If you agree to participate in the Study, or to the participation of your child in the Study, you will sign an informed consent form (“ICF”) for the Study that further describes the collection, use, and sharing of Personal Information. As further described below, the ICF supplements the information in this Privacy Notice. Vitaccess is providing this Privacy Notice to make you aware of how Personal Information is collected, used, and shared by us, including for purposes of the Study.
The remainder of this Privacy Notice is set out in the following sections:
1. What Personal Information We Collect
When you access the website, you will be asked to register with us and provide us with Personal Information to enable us to assess your eligibility to participate in the Study, either as a CF patient or a caregiver. The Personal Information we collect for these purposes includes the following:
- Your name and contact details, which we use to contact you in relation to the Study (by email)
- Date of birth
- Nationality information
- Information about your or your child’s condition (including CF)
- IP address
Device type, operating system, and internet browserIn order to conduct the eligibility assessment, we may also create Personal Information about you, such as a username and password and respondent ID. If you are, or your child is, eligible to participate in the Study and choose to do so, we will collect further Personal Information as described in the ICF.
2. How We Use Personal Information
We will use Personal Information for the conduct of the Study as described in the ICF. In addition, Personal Information may also be used:
- To monitor your use of the website, in order to check that it is being used appropriately, and for the purposes of administration and maintenance of the website and our systems
- To analyze your use of the website to improve website functionality, for example by measuring the response rates to the different surveys
- To protect or and enforce our legal rights and to comply with applicable laws (including data protection law)
- For our business purposes, including administering our technology and maintaining appropriate records
3. How We Share Personal Information
If you agree to participate in the Study (on your own behalf and/or that of your child) and sign the ICF, we may share Personal Information with the following persons and groups:
- Vertex, which is the company that is funding and developed the study
- The Study Steering Committee, which is overseeing the implementation of the Study and performing related activities (such as access to the Study database)
- Salus IRB, which is an ethics committee reviewing the Study to protect the rights of Study participants
- Other individuals and groups (such as technology service providers) as necessary for the conduct of the Study or other research studies
- Legal authorities and regulatory bodies
When possible, identifying information (such as name, email address, etc.) will be removed from the Personal Information and replaced with a code before the information is shared with another person or group. This coded information is sometimes called “pseudonymised” information.
No Personal Information that identifies or can be used to identify an individual will be made publicly available. If Vertex or other parties publish or present on the Study, the information in the publication or presentation will not identify any individual.
4. How Long We Keep Personal Information
We will retain your Personal Information for the time period described in the ICF. If we collect Personal Information from you and you are not eligible to participate in the Study or choose not to participate in the Study, we will delete or destroy the Personal Information as soon as possible and in all cases within sixty (60) days.
5. How We Protect Personal Information
We use reasonable security measures to protect Personal Information we collect through the site from theft, loss, or other access or use not described in this Privacy Notice. However, we cannot fully eliminate all security risks to this information due to the nature of the internet.
6. Your Privacy Choices
You may update the Personal Information you provide to us through the site at any time by following the instructions on the relevant page of the site or by contacting us at email@example.com. Further, if you are a parent accessing this website for your child’s participation in the Study and your child is 12 years of age or younger, you have a right to review or have deleted your child’s Personal Information and to refuse to permit further collection or use of your child’s Personal Information by contacting us at firstname.lastname@example.org. Additional rights that you may have are described in the ICF.
7. Vitaccess Contact Details
Please contact us at email@example.com or at the mailing address, email address, or phone number provided below if you have any questions about this Privacy Notice, including about our collection, use, or sharing of Personal Information.
Data Protection Officer
8. Changes to This Privacy Notice
We may change this Privacy Notice from time to time, with changes effective as of the date indicated on the updated notice. You should check the site periodically for the latest updates to the Privacy Notice. This Privacy Notice was last updated on .