ENS@T
ENS@T - the European Network for the Study of Adrenal Tumors - is a
European consortium, founded to investigate rare adrenal tumors.
This registry, developed by the
Melbourne eResearch Group based at the University of Melbourne, provides a means of
connecting the data from the specialist centres across Europe within a
single Virtual Research Environment (VRE).
Updates and News
Latest updates and news can be found here (last update: July 2020)
Subscribe to the latest ENS@T registry news and updates RSS feed using the following link - https://registry.ensat.org/news/ensat_rss.xml
RSS (Really Simple Syndication) is a low-impact way to be notified about changes and updates. Simply copy the link above into an RSS reader application such as FeedReader or TheOldReader.
Links and Documentation
For more information on ENS@T, please see the main ENS@T network site.
For help and guidance in using the registry, please refer to the documents below:
Registry User Guide
Registry Data Dictionary
Browser Security Guide
Lysosafe Connection Guide
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:
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Only summary patient information allowing potential collaborations
will be held in the registry; detailed information that could allow
identification will not be held.
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Users will only be allowed to browse the registry following approval
from the consortium.
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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.
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Privacy policy: The ENS@T registry does not store or
capture any personal information, but logs 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.
An example English language consent document can be found here and used as a template: Consent document example
Contacts
For any technical queries about the registry please contact
Anthony Stell, or
Prof Richard Sinnott.
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