Privacy Policy

Privacy Notice — The Appendicure Patient Registry

Last updated: 6 July 2026 · Version 1.0 · Version française

This notice explains how Appendicure collects and uses your personal information when you take part in the Appendicure Patient Registry, and the rights you have. It is written for people in the United Kingdom, the European Economic Area (EEA), and Canada (including Quebec) — protected by the UK GDPR, the EU GDPR, Canada’s PIPEDA, and Quebec’s Law 25. If you have any questions, contact us at info@appendicure.com.

1. Who we are

Appendicure is a patient-led nonprofit focused on appendiceal (appendix) cancers. We run a research registry that collects health information from people diagnosed with these rare cancers, to help researchers understand the disease and improve care. For this registry, Appendicure is the data controller.

Controller	Appendicure (patient-led nonprofit)
Address	159 NW 8th Street, Oak Island, NC 28465, United States
Country	United States
Contact	info@appendicure.com
Principal Investigator	Amanda Moore, Founder & Executive Director

2. Our EU and UK representatives (Article 27)

Because Appendicure is based in the United States, we have appointed representatives in the EU and the UK. If you are in the EU or UK and have questions or concerns about your personal data, you may contact our appointed GDPR representative:

3. What information we collect

We only collect information you choose to give us when you enroll in the registry. This includes:

• Identity and contact details — such as your name and email address.
• Demographic information — such as your age, sex, and country.
• Health information — your diagnosis, cancer subtype, stage, treatment history, and how you are doing.
• Genetic and molecular information — results such as GNAS, KRAS, TP53, MSI or TMB, and any molecular or pathology reports you upload.
• Documents you upload — such as your pathology report, which we use to confirm your diagnosis.

Health and genetic information are treated as special category data and receive the highest level of protection.

4. How we collect it

We collect this information directly from you, through the online registry form. Taking part is voluntary, and you can skip any question you do not want to answer.

5. Why we use your information, and our legal basis

We use your information to run a research registry that helps scientists understand appendiceal cancers and improve care and treatment — for example, to support evidence submissions such as a request to the NCCN about treatment guidelines.

Our legal basis is your consent. Under the UK and EU GDPR we rely on your consent (Article 6(1)(a)) and explicit consent for special category data (Article 9(2)(a)), plus the scientific-research provisions (Article 9(2)(j)); in the UK, the broad-consent-for-research provisions of the Data (Use and Access) Act 2025. If you live in Canada, we rely on your consent under PIPEDA, and if you live in Quebec, under Law 25. You can withdraw your consent at any time (see Sections 10 and 11).

6. Who we share it with

• Academic research partners — including MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, and the University of California San Diego. Where possible, we share information with direct identifiers removed. Partners only receive what they need, under written agreements.
• Our technology provider — the registry form and data are hosted on Jotform, which processes the data on our behalf under a data-processing agreement.

We do not sell your information, and we do not use it for advertising.

7. Where your information is stored (international transfers)

Appendicure is based in the United States, so your information is stored and processed in the US. To protect information transferred out of the UK/EEA, we use the European Commission’s Standard Contractual Clauses and the UK International Data Transfer Addendum. For Canadian participants, we ensure comparable protection travels with your data by contract, as PIPEDA requires. You can ask us for a copy of these safeguards using the contact details above.

8. How we protect your information

• Encryption of your information while it is stored and while it is being sent.
• Access limited to authorized Appendicure personnel who need it.
• Two-step login for accounts that can access the registry.
• A data-processing agreement with our hosting provider (Jotform).

9. How long we keep it

This is a long-term registry. We keep your information for as long as the registry operates, or until you ask us to remove it — whichever comes first. If you withdraw, we stop collecting new information from you and remove details that directly identify you. Information already shared with research partners before you withdrew cannot be recalled.

10. Your rights

• Ask to see the information we hold about you (access).
• Ask us to correct information that is wrong (rectification).
• Ask us to delete your information (erasure).
• Ask us to limit how we use it (restriction).
• Object to how we use it.
• Ask for a copy of your information in a reusable format (portability).
• Withdraw your consent at any time. This will not affect research already carried out before you withdrew.

How to make a request: use our representative’s secure GDPR portal at gdpr.euverify.com, email gdpr@euverify.com, or email us at info@appendicure.com.

11. Participants in Canada and Quebec

If you live in Canada, your personal information is protected by Canada’s federal law, PIPEDA. We collect and use it with your consent, and you may access and correct your information and withdraw consent at any time. If you live in Quebec, Quebec’s Law 25 also applies and adds rights, including deletion and data portability. A French-language version of this notice is available at appendicure.com/confidentialite. Une version française de cet avis est disponible à l’adresse appendicure.com/confidentialite.

12. How to complain

If you are unhappy with how we have handled your information, you can complain to a data protection authority:

• UK — Information Commissioner’s Office (ICO), ico.org.uk.
• EU/EEA — your national data protection authority.
• Canada — Office of the Privacy Commissioner of Canada (OPC), priv.gc.ca.
• Quebec — Commission d’accès à l’information du Québec (CAI), cai.gouv.qc.ca.

13. Changes to this notice

We may update this notice from time to time. When we do, we will change the “last updated” date at the top. If we make a significant change, we will tell registry participants.

14. Cookies and analytics

Our website, appendicure.com, uses cookies. We use Google Analytics to understand how people use our site. It sets cookies and collects information such as your approximate location, device and browser type, and the pages you view; this is processed by Google and may be stored in the United States. If you are in the UK, EEA, or Canada, we ask for your consent before these analytics cookies are set. You can accept or reject them using the cookie banner, change your choice at any time, or opt out at tools.google.com/dlpage/gaoptout. Cookies strictly necessary for the site to work do not require consent.