The Gorlin Syndrome Alliance has contracted with the Genetic Alliance (www.geneticalliance.org), to manage, host, and maintain the registry. Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. The software program being used is called the PEER platform. This same platform is being used by 40 other patient advocacy organizations, i.e., the Pancreatic Cancer Action Network, Celiac Disease Foundation and the Asthma and Allergy Foundation of America as well.
All data in the PEER system, the registry platform used by the Gorlin Syndrome Registry is encrypted when in transit and while at rest. Technology provider Private Access uses Secure Sockets Layer (SSL) encryption of the site, and nationally-recognized cloud services.
The production systems are hosted in the S3 Elastic Web service of the Amazon Web Services (AWS). Physical access to these data centers is strictly controlled both at the perimeter and at building ingress points by professional security staff utilizing video surveillance, intrusion detection systems, and other electronic means. For additional information about AWS’ security, see http://aws.amazon.com/security.
Private Access’ approach to security protocols has been to design, express, and enforce security as bounded architectural attributes, shared technical services, and redundant platform operations that occur as multiple occurrences throughout the service, both procedurally (user prompted) and systemically (automatically), and not merely as single points of occurrence (such as standard user name and password authentication and/or authorization techniques).
For those interested in learning more about PEER’s database structure and the way that researchers interact with the data stored there, this graphic provides a succinct summary.