A5 - American Australasian Asian Adrenal Alliance

Contact information

David A. Madrigal, MS
1150 W. Medical Center Dr.
5570 MSRB 2
Ann Arbor, MI 48109

Phone: (734) 647-5661
Fax: (734) 763-1725
Pager: 35939
Email: a5adrenalalliance AT med DOT umich DOT edu

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 the world within a single Virtual Research Environment (VRE).

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Links and Documentation

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

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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 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 A5 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

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Contacts

For any technical queries about the registry please contact Anthony Stell, or Prof Richard Sinnott.