The patient-led appendix cancer registry, for investigators.
A global, structured, research-ready dataset for a cancer that every major database underpowers.
The Appendicure Patient-Led Global Appendix Cancer Registry, protocol ID APPEND-REG-001, is a molecular, genomics, and pathology registry for appendiceal cancers. Patients and caregivers contribute their own diagnosis, pathology, biomarker, treatment, and outcome data directly, pooled across institutions and countries into one structured resource. Appendicure owns the registry, holds its own regulatory determination, and designates qualified researchers as investigators on approved projects.
This registry is operated by Appendicure. It is separate from and independent of the ACPMP Research Foundation’s Appendix Cancer/PMP Patient Registry, which is a natural history study running on NORD’s IAMRARE platform. The two registries collect different data. Ours is built around molecular, genomics, and pathology information. Patients may contribute to both, and we would encourage it. More data in more places is good for everyone with this disease.
Why the appendix cancer registry is patient-led
Most appendix cancer cases sit buried inside colorectal datasets or locked inside the single institution that treated them. That fragmentation is a main reason the science has moved slowly. A patient-led registry solves the supply problem at the source. It captures cases that registries miss, long-tail outcomes that never reach a chart note, and patient-reported detail that traditional records ignore. It augments hospital records rather than replacing them.
What the registry collects
Diagnosis and pathology
Tumor type, three-tier grade, stage, pathology review, and the full diagnostic path, including early misdiagnoses.
Treatment history
Surgery, systemic therapy, HIPEC, PIPAC, immunotherapy, and trial participation, with timing and setting.
Biomarkers and genomics
KRAS, GNAS, TP53, MSI, HER2, and mucin profiles, wherever molecular testing exists.
Outcomes over time
Recurrence, surveillance, and long-term follow-up that hospital records rarely capture.
Symptoms and quality of life
Patient-reported symptoms, side effects, and daily function across the disease course.
Demographics and access
Age at onset, geography, and the route each patient took to reach specialist care.
What the appendix cancer registry makes possible
A rare cancer only becomes tractable when its cases are gathered in one place. By pooling molecular results, treatment histories, and long-term outcomes across borders, the registry lets investigators ask questions a single institution could never power, such as how specific mutations respond to specific therapies, or how outcomes differ by subtype and grade. It also shortens the path from question to cohort. Instead of spending years assembling enough patients, an investigator can start from a structured, consented population that already exists. For patients, that means research moves faster. For the field, it means evidence built on more than a handful of scattered charts.
How to access the data
- Submit a request. Tell us your research question and the data fields you need. A short description is enough to start.
- Review. We review each request and share only the minimum data necessary to answer the question.
- Agreement. Investigators sign a data use and confidentiality agreement before any data is released.
- Access. De-identified data is the default. Identifiable data is shared only when a project cannot be done without it and the proper protections are in place.
The Appendicure Patient-Led Global Appendix Cancer Registry was reviewed by an independent institutional review board, which issued an exempt determination in June 2026 under 45 CFR 46.104(d)(2). Participation is voluntary, participants can withdraw at any time, and data is collected through secure, HIPAA-aligned systems on protected servers.
Contribute a patient
If you treat appendiceal cancer, your patients can contribute to the appendix cancer registry in about fifteen minutes from anywhere in the world. Pointing a patient to the registry costs nothing and strengthens the evidence base that every specialist relies on.
Request data or start a partnership.
Tell us your research question. We will get back to you quickly.
Contact the Registry Team Registry: United States Registry: International