An observational study in Appendix Cancer and Pseudomyxoma Peritonei, sponsored by Appendix Cancer Pseudomyxoma Peritonei Research Foundation. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-08-17.
Sponsored by Appendix Cancer Pseudomyxoma Peritonei Research Foundation · Observational
ACPMP's first-ever patient-powered global patient registry/natural history study collects patient and caregiver information and data to fuel clinical trials and drive breakthroughs for appendix cancer and PMP. We've invested the time and resources to make our Registry regulatory grade. Our Registry operates under active, ongoing Institutional Review Board (IRB) oversight by independent ethicists. It is powered by NORD's IAMRARE®, an industry gold standard platform built to be consistent with FDA's best thinking on natural history studies.
The ACPMP Research Foundation Appendix Cancer/PMP Patient Registry is a global, patient-powered natural history study designed to systematically collect longitudinal information from individuals affected by appendix cancer and Pseudomyxoma Peritonei (PMP).
The primary aim of the Registry is to improve understanding of these rare diseases, including their characteristics, clinical course, treatment patterns, and progression over time. Information collected through the Registry will help characterize the population affected by appendix cancer and PMP, support the development of recommendations and standards of care, and provide a resource for researchers studying disease biology, treatment outcomes, and accelerate the discovery of new treatments.
Participants, caregivers, and other authorized representatives provide information through a series of online surveys that include a prompt for patients to upload pathology reports, genomic sequencing, ctDNA reports and other relevant medical documents. Retrospective and prospective data collected include sociodemographic information, medical and diagnostic history, treatments, disease progression, management of care, and quality of life. Participants are asked to return periodically to update their information, allowing changes in disease and patient experience to be evaluated over time.
The Registry also serves as a resource to support future research and clinical trial development. With appropriate review and approval, Registry data may be used by researchers conducting retrospective studies or designing prospective studies of novel treatments. The Registry may also facilitate communication with participants about research opportunities and clinical trials for which they may be eligible.
The Registry is sponsored and managed by the Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation and is hosted on the National Organization for Rare Disorders (NORD) IAMRARE® platform. The study is conducted under Institutional Review Board (IRB) oversight and follows established procedures for the collection, management, protection, and appropriate research use of participant data.
86 studies on the registry are indexed under Appendiceal Neoplasms; 25 are open to participants now.
This study's planned enrollment of 10,000 is above the median of 284 across 16 observational studies indexed under Appendiceal Neoplasms.
Browse Appendiceal Neoplasms studies →This is the only study on the registry with Appendix Cancer Pseudomyxoma Peritonei Research Foundation as lead sponsor.
Counted across the registry records on this site, refreshed daily.
The study population consists of individuals diagnosed with appendix cancer who meet the Registry's eligibility criteria. Participants may provide information about themselves, or information may be provided by a legally authorized representative when applicable. Designated representatives may provide retrospective information for individuals who died from appendix cancer, as permitted by the study protocol. The Registry is available online and allows eligible individuals to contribute data from locations worldwide.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Individuals diagnosed with appendix cancer and/or Pseudomyxoma Peritonei (PMP) who enroll in the ACPMP Research Foundation Appendix Cancer/PMP Patient Registry. Participants, caregivers, or authorized representatives provide health and disease-related information through online surveys and may periodically update their information over time.
Natural history and clinical course of appendix cancer and Pseudomyxoma Peritonei (PMP)
Characterization of the natural history and clinical course of appendix cancer and Pseudomyxoma Peritonei (PMP) using participant- and caregiver-reported data collected through the ACPMP Patient Registry.
Time frame: Up to 5 years
Disease Characteristics
Disease characteristics of appendix cancer and pseudomyxoma peritonei (PMP), including disease type, extent, and other participant-reported disease characteristics.
Time frame: Up to 5 years
Treatment History
Cancer treatment history, including surgical procedures, chemotherapy, and other treatments received for appendix cancer and PMP.
Time frame: Up to 5 years
Diagnosis
Characteristics and timing of diagnosis of appendix cancer and PMP, including initial diagnosis and diagnostic findings.
Time frame: Up to 5 years
Disease Progression
Disease progression over time, based on participant- and caregiver-reported information regarding changes in disease status.
Time frame: Up to 5 years
Management of Care
Changes in management of care for appendix cancer and PMP, including treatments, procedures, and changes in care over time.
Time frame: Up to 5 years
Signs and Symptoms
Changes in signs and symptoms associated with appendix cancer and PMP over time, based on participant- and caregiver-reported data.
Time frame: Up to 5 years
Plan to share: Undecided
Started Feb 2026 (actual). Primary completion is estimated for Feb 2030, 47 months after the start.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.