Most members of the Alpha-1 community are concerned about the confidentiality of their diagnosis, medical data, and demographic information such as Social Security number. This view is reasonable given insurance economics that charge higher premiums for those persons at risk of being future financial burdens, with or without the burden of current disease. Genetic discrimination has also been highlighted in the Alpha-1 community for persons who have lost employment because of the higher insurance premiums their diagnosis brought.
With these issues foremost in mind, the Alpha-1 Research Registry has established policies and procedures to minimize those risks. These policies are administered through the Medical and Scientific Advisory Board of the Alpha-1 Foundation and through the Medical University of South Carolina's Institutional Review Board (IRB) for Human Research.
All data is currently kept in an MUSC server secured behind an MUSC firewall. The system is protected from unauthorized access by the MUSC firewall. Access to each database provided on the server is by username and password issued to a specific Registry staff member. To facilitate registry enrollment at off-site patient meetings, coordinators can access Registry records through an encrypted Internet connection with an intermediary MUSC server that communicates with the registry computer via an encrypted Intranet connection. No access to the system is possible from outside the MUSC network except by secure and authenticated VPN.
At the current time, the protection given individuals consists of the following:
1) All phone inquiries about personal Registry records require two unique identifiers to be named before any information in a record can be changed.
2) All paper and computer data is kept in locked facilities.
3) Researchers are never able to obtain your name, phone number, address or Social Security number without your permission.
4) The Alpha-1 Foundation staff in Miami are also isolated from the data and are therefore unable to answer many questions about the Registry.
Please be assured that the Alpha-1 Research Registry values confidentiality and asks that you be patient when we are unable to answer specific phone inquiries because of this concern. If you have any lingering concerns about confidentiality issues, the Registry staff will be happy to discuss them with you.
Last updated: April 23, 2013