The Appendix Cancer PMP Research Foundation Natural History Study/Patient Registry

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.

Eligibility

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.

Conditions3

Locations1 site

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