Appendix CancerNCT07769346
The Appendix Cancer PMP Research Foundation Natural History Study/Patient Registry
An observational study of Appendix Cancer and Pseudomyxoma Peritonei, run by Appendix Cancer Pseudomyxoma Peritonei Research Foundation at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Appendix Cancer, Pseudomyxoma Peritonei
- How many people
- 10,000 participants
- Where
- 1 siteUnited States
- Study dates
- 2 Feb 2026to 1 Feb 2030
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
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.
Who may be able to join
- 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.
Who cannot join
- Individuals who do not meet the study inclusion criteria.
- Individuals for whom required informed consent cannot be obtained.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
ACPMP
Springfield, Pennsylvania, 19064
Margaret Najarian Patient Registry Coordinator, (833) 227-6773 ext. 704, patientregistry@acpmp.org
About this study
Official title: The ACPMP Research Foundation Appendix Cancer/PMP Patient Registry
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.
Read the detailed 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 and standards of care, and provide a resource for researchers studying disease biology, treatment outcomes, and accelerate the discovery of new treatments.
Participants, caregivers, and other authorized representatives provide information through a series of online surveys that include a prompt for patients to upload pathology reports, genomic sequencing, ctDNA reports and other relevant medical documents. Retrospective and prospective data collected include sociodemographic information, medical and diagnostic history, treatments, disease progression, management of care, and quality of life. Participants are asked to return periodically to update their information, allowing changes in disease and patient experience to be evaluated over time.
The Registry also serves as a resource to support future research and clinical trial development. With appropriate review and approval, Registry data may be used by researchers conducting retrospective studies or designing prospective studies of novel treatments. The Registry may also facilitate communication with participants about research opportunities and clinical trials for which they may be eligible.
The Registry is sponsored and managed by the Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation and is hosted on the National Organization for Rare Disorders (NORD) IAMRARE® platform. The study is conducted under Institutional Review Board (IRB) oversight and follows established procedures for the collection, management, protection, and appropriate research use of participant data.
- Conditions
- Appendix Cancer, Pseudomyxoma Peritonei
- Keywords
- Appendix Cancer, Appendiceal Cancer, Appendiceal Neoplasm, Appendiceal Neoplasms, Appendiceal Adenocarcinoma, Pseudomyxoma Peritonei, PMP, Peritoneal Surface Malignancy, Peritoneal Surface Malignancies, Patient Registry, Rare Cancer, Natural History Study, Natural History, Goblet Cell, Signet Ring Cell, LAMN, Low-Grade Appendiceal Mucinous Neoplasm, High-Grade Appendiceal Mucinous Neoplasm, HAMN
- Medical subject headings
- Appendiceal Neoplasms, Pseudomyxoma Peritonei, Adenocarcinoma, Mucinous, Peritoneal Neoplasms
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 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. |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: Up to 5 years
Secondary outcomes (6)
Disease Characteristics
Disease characteristics of appendix cancer and pseudomyxoma peritonei (PMP), including disease type, extent, and other participant-reported disease characteristics.
Measured: Up to 5 years
Treatment History
Cancer treatment history, including surgical procedures, chemotherapy, and other treatments received for appendix cancer and PMP.
Measured: Up to 5 years
Diagnosis
Characteristics and timing of diagnosis of appendix cancer and PMP, including initial diagnosis and diagnostic findings.
Measured: Up to 5 years
Disease Progression
Disease progression over time, based on participant- and caregiver-reported information regarding changes in disease status.
Measured: Up to 5 years
Management of Care
Changes in management of care for appendix cancer and PMP, including treatments, procedures, and changes in care over time.
Measured: Up to 5 years
Signs and Symptoms
Changes in signs and symptoms associated with appendix cancer and PMP over time, based on participant- and caregiver-reported data.
Measured: Up to 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted17 Aug 2026
- Study start2 Feb 2026
- Primary completion1 Feb 2030 (estimated)
- Study completion1 Feb 2030 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Appendix CancerStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 10,000 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Appendix Cancer Pseudomyxoma Peritonei Research Foundation
- Sponsor type
- University, hospital or other
- Collaborators
- National Organization for Rare Disorders
- Responsible party
- Sponsor
- Investigators
- Deborah Shelton, Principal investigator, ACPMPDr. Erin P. Ward, MD, Study chair, University of Utah
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07769346
- Sponsor's protocol ID
- ACPMP-001
- Other IDs
- NB500335
- Status last verified
- Aug 2026
- First submitted
- 12 Aug 2026
- Last updated
- 17 Aug 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 17 Aug 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The ACPMP Research Foundation Appendix Cancer/PMP Patient Registry
- ClinicalTrials.gov ID
- NCT07769346
- Acronym / sponsor ID
- ACPMP-001
- Conditions
- Appendix Cancer, Pseudomyxoma Peritonei
- Keywords
- Appendix Cancer, Appendiceal Cancer, Appendiceal Neoplasm, Appendiceal Neoplasms, Appendiceal Adenocarcinoma, Pseudomyxoma Peritonei, PMP, Peritoneal Surface Malignancy
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 10,000 participants (estimated)
- Lead sponsor
- Appendix Cancer Pseudomyxoma Peritonei Research FoundationUniversity, hospital or other
- Collaborators
- National Organization for Rare Disorders
- Study start
- 2 Feb 2026 (actual)
- Primary completion
- 1 Feb 2030 (estimated)
- Study completion
- 1 Feb 2030 (estimated)
- First posted
- 17 Aug 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed 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 and standards of care, and provide a resource for researchers studying disease biology, treatment outcomes, and accelerate the discovery of new treatments.
Participants, caregivers, and other authorized representatives provide information through a series of online surveys that include a prompt for patients to upload pathology reports, genomic sequencing, ctDNA reports and other relevant medical documents. Retrospective and prospective data collected include sociodemographic information, medical and diagnostic history, treatments, disease progression, management of care, and quality of life. Participants are asked to return periodically to update their information, allowing changes in disease and patient experience to be evaluated over time.
The Registry also serves as a resource to support future research and clinical trial development. With appropriate review and approval, Registry data may be used by researchers conducting retrospective studies or designing prospective studies of novel treatments. The Registry may also facilitate communication with participants about research opportunities and clinical trials for which they may be eligible.
The Registry is sponsored and managed by the Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation and is hosted on the National Organization for Rare Disorders (NORD) IAMRARE® platform. The study is conducted under Institutional Review Board (IRB) oversight and follows established procedures for the collection, management, protection, and appropriate research use of participant data.
Study design
- Observational model
- Cohort
- Time perspective
- Other
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| 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. |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- 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.
Key inclusion criteria (4 listed)
- 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.
Key exclusion criteria (2 listed)
- Individuals who do not meet the study inclusion criteria.
- Individuals for whom required informed consent cannot be obtained.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Natural history and clinical course of appendix cancer and Pseudomyxoma Peritonei (PMP)
Time frame: Up to 5 years
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.
6 secondary outcomes
Disease Characteristics
Time frame: Up to 5 years
Treatment History
Time frame: Up to 5 years
Diagnosis
Time frame: Up to 5 years
Disease Progression
Time frame: Up to 5 years
Management of Care
Time frame: Up to 5 years
Signs and Symptoms
Time frame: Up to 5 years
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 17 Aug 2026.
- The ACPMP Research Foundation Appendix Cancer/PMP Patient RegistryLink provided by the sponsor.
- Individual participant dataSharing planned: Undecided
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Deborah Shelton principal investigator
ACPMP
Dr. Erin P. Ward, MD study chair
University of Utah
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Appendix Cancer and Pseudomyxoma Peritonei, run by Appendix Cancer Pseudomyxoma Peritonei Research Foundation at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 17 Aug 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Margaret Najarian ((833) 227-6773 ext. 704, patientregistry@acpmp.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Natural history and clinical course of appendix cancer and Pseudomyxoma Peritonei (PMP) (time frame: Up to 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 17 Aug 2026.