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PLANET (Neuro-Endocrine Tumour) Registry supported by IPSEN |
Summary
The neuro-endocrine tumour (NET) registry contains phenotypic information associated with studies concerning NET patients.
This registry, developed by the Melbourne eResearch Group based at the University of Melbourne, provides a means of gathering data about neuro-endocrine (NET) tumours.
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 NET 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. The full security, privacy and context document can be accessed here.
Additionally, ethical consent for storing patient information in the registry will need to be obtained according to the statutes of your country and institution.
Contacts
For any technical queries about the registry please contact Anthony Stell, or Prof Richard Sinnott.
