Privacy Policy

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 UK 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

You give consent through a clear affirmative action, such as agreeing to take part in our research community. Community members also receive our emails as part of their membership, as described under Data Usage, and can unsubscribe from them at any time. Simply using this site is not taken as consent to anything, and you can withdraw a consent you have given at any time.

Data Collection

We collect various types of information in our Research Community 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 your contact information is to send you emails with information and updates about research, fundraising, awareness initiatives and our upcoming Patient Data Platform. Community members receive these emails as part of their membership. You can unsubscribe at any time with the link in every email, or on your community page, and we will stop. Messages about the community itself, such as follow-up questions, study invitations and important changes to the community or its terms, go to every member.

Research Community: This information aids in researching and understanding PSSD, PFS and PAS. It helps build a community of individuals interested in participating in future research studies. 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.

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.

Data Retention

We retain personal data only for as long as necessary to fulfil 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 the personal data we hold about you. 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, contact us at contact@sidefxhub.com or use the Manage my data page.

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

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