The ACPMP Research Foundation Appendix Cancer/PMP Patient Registry
Appendix Cancer Pseudomyxoma Peritonei Research Foundation
Summary
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.
Description
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…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Diagnosis of appendix cancer. * Meets the study inclusion criteria for participation. * Participant or, when applicable, a legally authorized representative (LAR) is able to provide informed consent and enter information into the Registry. * A designated representative may provide retrospective information for an individual who died from appendix cancer, as permitted by the study protocol. Exclusion Criteria: * Individuals who do not meet the study inclusion criteria. * Individuals for whom required informed consent cannot be obtained.
Location
- ACPMPSpringfield, Pennsylvania