INFORMED CONSENT — INTERNATIONAL PARTICIPANTS
The Appendicure Patient Registry
Study Name: The Appendicure Patient Registry
Protocol Number: APPEND-REG-001
Sponsor: Appendicure (a US-based, patient-led nonprofit)
Principal Investigator: Amanda Moore, Executive Director
Contact: info@appendicure.com
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Appendicure runs a long-term research registry for appendiceal cancers. Because you live outside the United States, this form explains what we collect, why, where your data goes, and your rights under the UK GDPR, the EU GDPR, and Canada's PIPEDA (including Quebec's Law 25). Taking part is completely voluntary.
What we collect. Your contact details and the health information you choose to share, including your diagnosis, pathology and molecular/genomic reports, treatment history, and outcomes. Under UK, EU, and Canadian law this is sensitive (special category) data and receives the highest level of protection.
Why we collect it. To build a long-term research registry that helps scientists understand appendiceal cancers, a rare group of diseases, and improve care and treatment options.
Where your data goes. Appendicure is based in the United States, so your data is stored and processed in the US. US privacy law is not the same as UK, EU, or Canadian law. We protect your data with encryption (both while it is stored and while it is being sent), access controls that limit who can see it, and two-step login. You can contact our representatives (listed below) at any time.
How long we keep it. This is a long-term registry. We keep your data for as long as the registry operates, or until you ask us to remove it, whichever comes first.
Your rights and choices. Wherever you live, Appendicure gives you these rights directly, as our own promise to you: see the information we hold about you; correct anything that is wrong; delete your information; withdraw from the registry at any time; and ask us any question about how we use your data. To use any of these, email info@appendicure.com. We will help you.
If you live in the UK, the EU, or Canada, you also have legal rights under your own privacy laws (the UK GDPR, the EU GDPR, or Canada's PIPEDA). That means you can also contact our data protection representative, Euverify, at gdpr@euverify.com, or use the secure portal at https://gdpr.euverify.com/verify/c29610a0-8e94-4717-9678-b2e8a40397a6. You can also make a complaint to your privacy authority. In the UK this is the Information Commissioner's Office (ICO). In the EU it is your country's data protection authority. In Canada it is the Office of the Privacy Commissioner of Canada. In Quebec it is the Commission d'accès à l'information (CAI).
If you live in another country, your local privacy laws may also give you rights. Contact us at info@appendicure.com and we will help.
Full details are in our Privacy Notice: https://appendicure.com/privacy-policy/ (French: https://appendicure.com/confidentialite).
Our representatives. EU representative: Euverify Ltd (Ireland), Unit 3D North Point House, North Point Business Park, New Mallow Road, Cork, T23 AT2P, Ireland. Email: gdpr@euverify.com. UK representative: Euverify Ltd (UK), 3rd Floor, 86-90 Paul Street, London, EC2A 4NE, United Kingdom. Email: gdpr@euverify.com.
By ticking the box below and submitting this form, you confirm that you understand and agree. Your electronic signature has the same legal effect as a handwritten signature. You must be 18 or older to take part.