ACPMP Patient Registry
ACPMP is excited to announce the creation of the ACPMP Appendix Cancer Pseudomyxoma Peritonei Patient Registry, a collaborative effort between ACPMP Research Foundation and the National Organization for Rare Disorders (NORD) to study Appendix Cancer and Pseudomyxoma Peritonei.
The ACPMP Patient Registry will create a platform for patients around the world to share information about Appendix Cancer and Pseudomyxoma Peritonei in order to build an international resource to be used by scientists in future research.
The ACPMP Patient Registry will be a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry.
The ACPMP Patient Registry will be a powerful opportunity for individuals with Appendix Cancer and/or Pseudomyxoma Peritonei and their family members to contribute directly to research that will enhance our understanding of these diseases, thus facilitating the development of new diagnostic and treatment options.
The ACPMP Patient Registry will be more than a versatile online system that securely collects and stores data for medical research; it will be a dynamic participant-driven resource that can empower and unite the Appendix Cancer and Pseudomyxoma Peritonei community through shared knowledge. Participation in the ACPMP Patient Registry will be free and voluntary, and participants may withdraw at any time.
The ACPMP Patient Registry is currently under development and is expected to launch in the Summer of 2021. Sign up for ACPMP's mailing list or follow ACPMP on Facebook and Twitter to receive the latest updates on the ACPMP Patient Registry.
Presentation by Deborah Shelton on the New Patient Registry from the October 2, 2020 Appendix Cancer Survivorship Symposium: