NCT07769346

Brief 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.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
10,000

participants targeted

Target at P75+ for all trials

Timeline
41mo left

Started Feb 2026

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress17%
Feb 2026Feb 2030

Study Start

First participant enrolled

February 2, 2026

Completed
6 months until next milestone

First Submitted

Initial submission to the registry

August 12, 2026

Completed
5 days until next milestone

First Posted

Study publicly available on registry

August 17, 2026

Completed
3.5 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

February 1, 2030

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

February 1, 2030

Last Updated

August 17, 2026

Status Verified

August 1, 2026

Enrollment Period

4 years

First QC Date

August 12, 2026

Last Update Submit

August 14, 2026

Conditions

Appendix CancerPseudomyxoma Peritonei

Keywords

Appendix CancerAppendiceal CancerAppendiceal NeoplasmAppendiceal NeoplasmsAppendiceal AdenocarcinomaPseudomyxoma PeritoneiPMPPeritoneal Surface MalignancyPeritoneal Surface MalignanciesPatient RegistryRare CancerNatural History StudyNatural HistoryGoblet CellSignet Ring CellLAMNLow-Grade Appendiceal Mucinous NeoplasmHigh-Grade Appendiceal Mucinous NeoplasmHAMN

Outcome Measures

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.

    Up to 5 years

Secondary Outcomes (6)

  • Disease Characteristics

    Up to 5 years

  • Treatment History

    Up to 5 years

  • Diagnosis

    Up to 5 years

  • Disease Progression

    Up to 5 years

  • Management of Care

    Up to 5 years

  • +1 more secondary outcomes

Study Arms (1)

Participants with Appendix Cancer and/or Pseudomyxoma Peritonei (PMP)

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.

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study 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.

You may qualify if:

  • Diagnosis of appendix cancer.
  • 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.

You may not qualify if:

  • Individuals for whom required informed consent cannot be obtained.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

ACPMP

Springfield, Pennsylvania, 19064, United States

RECRUITING

Related Links

MeSH Terms

Conditions

Appendiceal NeoplasmsPseudomyxoma PeritoneiAdenocarcinoma, MucinousPeritoneal Neoplasms

Condition Hierarchy (Ancestors)

Cecal NeoplasmsIntestinal NeoplasmsGastrointestinal NeoplasmsDigestive System NeoplasmsNeoplasms by SiteNeoplasmsDigestive System DiseasesGastrointestinal DiseasesCecal DiseasesIntestinal DiseasesAdenocarcinomaCarcinomaNeoplasms, Glandular and EpithelialNeoplasms by Histologic TypeNeoplasms, Cystic, Mucinous, and SerousAbdominal NeoplasmsPeritoneal Diseases

Study Officials

  • Deborah Shelton

    ACPMP

    PRINCIPAL INVESTIGATOR

  • Dr. Erin P. Ward, MD

    University of Utah

    STUDY CHAIR

Central Study Contacts

Margaret Najarian

CONTACT

(833) 227-6773patientregistry@acpmp.org

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

August 12, 2026

First Posted

August 17, 2026

Study Start

February 2, 2026

Primary Completion (Estimated)

February 1, 2030

Study Completion (Estimated)

February 1, 2030

Last Updated

August 17, 2026

Record last verified: 2026-08

Locations

US(1)