The Appendix Cancer PMP Research Foundation Natural History Study/Patient Registry
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorAppendix Cancer Pseudomyxoma Peritonei Research Foundation
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
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.
Disqualifiers
Individuals who do not meet the study inclusion criteria.
Individuals for whom required informed consent cannot be obtained.
Trial population
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.
Trial design
Design model
Cohort
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
10,000 Participants
are grouped into 1 trial groupGroup A: Participants with Appendix Cancer and/or Pseudomyxoma Peritonei (PMP)
Trial outcomes
Primary outcomes
1
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 yearsSecondary outcomes
1
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 years2
Treatment History
Cancer treatment history, including surgical procedures, chemotherapy, and other treatments received for appendix cancer and PMP.
Time frame
Up to 5 years3
Diagnosis
Characteristics and timing of diagnosis of appendix cancer and PMP, including initial diagnosis and diagnostic findings.
Time frame
Up to 5 years4
Disease Progression
Disease progression over time, based on participant- and caregiver-reported information regarding changes in disease status.
Time frame
Up to 5 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Appendix Cancer Pseudomyxoma Peritonei Research Foundation
Lead sponsor
National Organization for Rare Disorders
Collaborator
Source ClinicalTrials.gov