Privacy Policy and Terms and Conditions of Use
Version PRIV 1.1 dated 29 May 2024
Introduction
Welcome to SIDEfxHUB. We are committed to protecting the privacy and security of our users. This Privacy Policy outlines how we collect, use, protect, and share personal information gathered about you, in accordance with applicable data protection laws, including the GDPR and the Data Protection Act 2018.
Your data is controlled by SIDEfxHUB, a Charitable Incorporated Organisation (CIO) registered with The Charity Commission (Number 1203385). The Data Protection Officer at this organisation is Gary Shields.
Consent
By using our services, you agree to the collection and use of information in relation to this policy. You actively agree to our Terms and Conditions through clear affirmative actions, such as ticking boxes to receive our newsletters or agreeing to participate in our research registry.
Data Collection
We collect various types of information in our Research Registry and Newsletter to provide and improve our services to you. Such information includes:
- Name and e-mail address
- Research interests for study participation.
- Demographic information such as birth year, gender, and country of residence.
Data Usage
Newsletter: The purpose of collecting this data (your contact information) is to send you emails with information, updates about research, fundraising, awareness initiatives and our upcoming Patient Data Platform.
Research Registry: This information aids in researching and understanding PSSD and PFS. It helps build a registry of individuals interested in participating in future research studies related to PFS and PSSD. When suitable research opportunities arise, and if your profile matches the study criteria, we will contact you to obtain your additional consent before sharing your information with the relevant researcher or institution.
We will use your contact information to keep you informed about updates on the Patient Data Platform, currently in development, which will also support future research projects.
Sharing of Data
Personal data is not sold, traded, or rented. Personal data is shared only with third-party service providers and, with your explicit consent, under strict confidentiality agreements for operational purposes and with UK authorities as legally required.
Lawful Basis for Processing Your Data
We can only process your personal data if there are legal grounds to do so. These include:
Consent: You give us clear permission to process your data. This involves explicit electronic consent, which can be withdrawn at any time without needing a reason.
Legitimate interest: We may also process data without explicit consent for purposes you might reasonably expect, in line with the charity’s objectives and in your best interests.
Risks Associated with Processing Your Data
The main risks to you could be:
- Your privacy is compromised
- Your information is used for an unauthorised purpose
Please see Data User Impact Statement for more details.
Third-Party Services
We use no third-party services to collect, store, use or share your data.
Data Retention
We retain personal data only for as long as necessary to fulfill the purposes we collected it for, including satisfying any legal, accounting, or reporting requirements.
International Transfers
Your information, including Personal Data, may be transferred to—and maintained on—computers located outside your state, province, country, or other governmental jurisdiction where the data protection laws may differ from those of your jurisdiction.
Your Rights
You have the right to access, correct, delete, or transfer your personal data that we hold. You also have the right to withdraw consent at any time where we rely on consent to process your personal data. To exercise any of these rights, please contact us at contact@sidefxhub.com.
Security
We are committed to ensuring that your information is secure. We have put in place suitable physical, electronic, and managerial procedures to safeguard and secure the information we collect online.
Children’s Privacy
Our services do not address anyone under the age of 13. We do not knowingly collect personally identifiable information from anyone under the age of 13.
Changes to This Privacy Policy
We may update our Privacy Policy from time to time. We will notify you of any changes by posting the new Privacy Policy on this page.
Contact Us
If you have any questions about this Privacy Policy, please contact us:
Email: contact@sidefxhub.com