Clinical trial · Observational
The Appendix Cancer PMP Research Foundation Natural History Study/Patient Registry
The ACPMP Research Foundation Appendix Cancer/PMP Patient Registry
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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.
Conditions
Conditions (2)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Appendix Cancer | Malignant Appendix Neoplasm | ALIAS | 0.90 |
| Pseudomyxoma Peritonei | Pseudomyxoma Peritonei | ONTOLOGY_EXACT | 0.98 |
Interventions
Interventions (0)
Data not yet available
Design
Arms and outcomes
Arms (1)
- label
- Participants with Appendix Cancer and/or Pseudomyxoma Peritonei (PMP)
- description
- 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.
Primary outcomes (1)
- measure
- Natural history and clinical course of appendix cancer and Pseudomyxoma Peritonei (PMP)
- timeFrame
- Up to 5 years
- description
- 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.
Secondary outcomes (6)
- measure
- Disease Characteristics
- timeFrame
- Up to 5 years
- description
Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
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.
References
Publications (0)
Data not yet available