Registry — Terms of Use

Introduction

Welcome to the SIDEfxHUB Registry. By accessing or using our registry, you agree to comply with and be bound by the following terms and conditions. Please read these terms carefully before using the registry.

Data Collection and Usage

We collect personal information to facilitate research and understanding of iatrogenic diseases. Your data will be securely stored and managed, then anonymised for sharing with researchers and relevant parties. We will use your contact information to keep you informed about updates on the Patient Data Platform, which we are currently developing.

Information We Collect

In the registry, we collect the following information:

• Name or pseudonym
• Contact data (email address)
• Research interests (PFS, PSSD, and/or PAS)
• Demographic information (birth year, gender, country of residence and town/city)

Lawful Basis for Processing Your Data

We process your personal data based on the following legal grounds:

• Consent: You provide clear permission to process your data. This involves explicit electronic consent, which can be withdrawn at any time without the need for a reason.
• Legitimate Interest: We may process data without explicit consent for purposes reasonably expected, aligned with the charity’s objectives, and in your best interests.

Risks Associated with Processing Your Data

The main risks include:

• Compromise of your privacy
• Misuse of your information for unauthorised purposes

We regularly conduct risk assessments and implement measures to minimise risks. When risks cannot be completely eliminated, we will inform you of the associated benefits to help you decide whether to provide the information.

Data Sharing

Your data will not be shared without your additional consent. If a relevant future study arises, we will contact you to obtain explicit consent to share your email address with researchers. Your information will only be shared if you respond affirmatively.

Your Rights

You have the right to:

• Withdraw or withhold consent
• Access, correct, delete, or transfer your personal data

To exercise any of these rights, please contact us at contact@sidefxhub.com, or use the Manage my data page.

Changes to These Terms and Conditions

We may update our Registry Terms and Conditions from time to time. You will be notified of any changes and asked to confirm your consent to such changes.

Contact Us

If you have any questions about these Terms and Conditions, please contact us:
Email: contact@sidefxhub.com

SIDEfxHUB — Charity Registered in the UK as “SIDEfxHUB”.
UK Registered Charity Number: 1203385.