ACPMP Launches the First-Ever Appendix Cancer/PMP Patient Registry

The Appendix Cancer PMP (ACPMP) Research Foundation, in partnership with the National Organization for Rare Disorders (NORD), has launched the first-ever ACPMP Research Foundation Appendix Cancer/Pseudomyxoma Peritonei Patient Registry (ACPMP Patient Registry). The Registry provides a secure platform for patients and caregivers worldwide to share information about appendix cancer and pseudomyxoma peritonei (PMP).

“The ACPMP Patient Registry will provide a complete picture of each patient’s experience with appendix cancer. We are launching this initiative to help collect as much patient data as possible for use by researchers and medical experts to advance research and one day, find a cure for all.”
— Deborah Shelton, Executive Director, Appendix Cancer PMP Research Foundation

What is the ACPMP Patient Registry?

The ACPMP Patient Registry is a patient-powered natural history study designed to support future research, accelerate the development of new diagnostics and treatments, and empower the appendix cancer and PMP community through shared knowledge.

More than a database or a collection of surveys, the Registry is designed to collect high-quality, long-term data from patients and caregivers around the world to help researchers better understand appendix cancer and PMP, support clinical trials, and drive breakthroughs in diagnosis and treatment.

  • It operates under active, ongoing Institutional Review Board (IRB) oversight, helping ensure that participant rights, privacy, data security, and ethical research practices remain central throughout the study.
  • It is powered by NORD’s IAMRARE® platform, a rare disease research platform built to be consistent with the FDA’s current thinking on natural history studies.

How your participation advances research

Participants share information through secure electronic surveys about their diagnosis, treatment, disease progression, outcomes, surveillance, and quality of life. Participants can also upload their own pathology reports, genomic sequencing and ctDNA reports, and other clinical information.

By bringing this information together in one global data bank, the Registry will help researchers:

  • Better understand appendix cancer and PMP and how they progress
  • Identify patterns in diagnosis, treatments, tumor characteristics, and outcomes
  • Support the development of new diagnostics and treatments
  • Inform future clinical trials and research initiatives

Data shared with researchers is de-identified to protect participant privacy.

Who can join?

Participation is free and voluntary and open to individuals with appendix cancer and/or PMP, as well as their caregivers or guardians. Whether you are newly diagnosed, currently in treatment, a long-term survivor, or participating on behalf of a loved one, your experience can help build the foundation for future research. The Registry can be completed at your own pace, and participants may withdraw at any time.

Expert guidance

Dr. Erin Ward of the University of Utah Huntsman Cancer Institute serves as Chief Medical Advisor for the ACPMP Patient Registry, continuing her valued collaboration on this critical initiative.

Join the Registry today

Every participant adds valuable information to a growing global research resource dedicated specifically to appendix cancer and PMP. Learn more and join the ACPMP Patient Registry.