Privacy Statement for Project MinE

 

Project MinE is committed to protecting your privacy and ensuring the security of your personal data. This privacy statement explains how we collect, use, and safeguard information in compliance with applicable data protection regulations, including the EU General Data Protection Regulation (GDPR).

 

1. Data We Collect

 

We collect and process personal data only when necessary for research purposes, operational activities, or communication. The types of data we may collect include:

 

• Information provided through consent forms (e.g., participant names, contact details, health data).
• Visitor information for our website (e.g., cookies, IP addresses).

We only collect data from participants and healthy controls who have provided explicit consent.

 

 

2. How We Use Your Data

 

Data collected through Project MinE is used exclusively for research purposes aimed at advancing our understanding of ALS and related conditions. We do not share personal data with third parties unless explicitly agreed to by the individual or required by law.

 

 

3. Data Security and Storage

 

Project MinE data is securely stored on the SURFsara computing platform in the Netherlands. This system adheres to strict security protocols to ensure data protection and compliance with privacy regulations.

 

 

4. Data Sharing and Access

 

Access to Project MinE data is granted only to bona fide researchers through a strict application and approval process. Shared data is anonymised and governed by data access agreements to ensure it is used solely for ethical and public-interest research.

 

 

5. Your Rights

 

As a participant or data subject, you have the right to:

 

• Request corrections or updates to your information.
• Withdraw your consent at any time.

 

 

6. Cookies and Website Use

 

Our website may use cookies to improve user experience and gather analytics. You can manage cookie preferences through your browser settings.

 

 

7. Contact Information

 

If you have questions about this privacy statement or how your data is handled, please contact us:

Email: info@projectmine.com
Address: ALS Centre Netherlands, Amsterdam UMC

 

 

8. Updates to This Privacy Statement

 

This privacy statement may be updated periodically. Changes will be reflected on this page, and we encourage users to review it regularly.

 

 

Commitment to Transparency

 

At Project MinE, we value your trust and are committed to conducting research responsibly while prioritizing data privacy and security. Thank you for supporting our mission to find a cure for ALS.