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MUlticenter Evaluation of Pheochromocytoma and Paraganglioma Diagnostic TEsting, Subdifferentiation, Therapy, Outcome and Genetics (MUPPET) |
Summary
This study is a clinical study designed to evaluate cardiovascular, metabolic and oncologic courses in relation to genetics and disease biomarkers for variations in the clinical presentation, prognosis and outcome of PPGL patients. Enrolment and observation will be conducted over the course of 10 years. The target population are patients with newly-diagnosed or historical PPGLs and those with genetic mutations in known PPGL susceptibility genes.
This registry, developed by the Melbourne eResearch Group based at the University of Melbourne, provides a means of gathering data about pheochromocytomas and paragangliomas (PPGLs).
Rules and Responsibilities
Use of the registry is subject to certain rules and responsibilities constituting fair usage and protecting the rights of patients whose details are contained within the registry, as well as the clinicians. In summary these include:
- Only summary patient information allowing potential collaborations will be held in the registry; detailed information that could allow identification will not be held.
- Users will only be allowed to browse the registry following approval from the project consortium.
- Audit tracking software monitors access patterns, machine locations and user IDs. With this information it is possible to accurately track and identify any illegal usage.
- Privacy policy: The online registry does not store or capture any personal information, but does log the user's IP address which is automatically recognised by the web server. The website and server logs are hosted by the Melbourne eResearch Group at the University of Melbourne and the IP information is accessed through tools provided by Google Analytics. We do not use cookies for collecting user information from the site and we will not collect any information about you except that required for conducting research within the consortium, enforcing consortium privacy rules, or for system administration of the registry.
Additionally, ethical consent for storing patient information in the registry will need to be obtained according to the statutes of your country and institution.
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This eCRF is linked to the ENSAT registry, which is a repository for many adrenal cancer studies around Europe.
Information about the ENSAT network can be found at the ENSAT website and registry
Documents for ENSAT (English language)
Contacts
For any technical queries about the registry please contact Anthony Stell, or Prof Richard Sinnott.
