Technology plays an enormous role in healthcare delivery and basic and applied research. Electronic medical records are capable of storing a patient’s medical history and can be shared by doctors and hospitals regardless of their geographic location. Clinical decision support systems have been designed to assist physicians and other health professionals with decision-making tools, including diagnosis. In research, sophisticated robotics, high-throughput screening, and bioinformatics have changed the pace at which scientists work. The world of medicine has been transformed by technology – technology that produces an extraordinary volume of data.
Indeed, the combined raw data generated by genotyping using both Affymetrix 6.0 and DMET Plus chip technologies for each Coriell Personalized Medicine Collaborative® (CPMC®) research study participant totals more than 1.2 gigabytes of information. The addition of abstracted SNP data, demographics, medical history, family history, lifestyle data, outcome survey results, and risk reports, increase the total storage needed per person to roughly 1.5 gigabytes. That is 1.5 gigabytes per participant. The study is fast approaching 10,000 participants; the enrollment goal is 100,000 participants.
Once CPMC study participants establish an encrypted connection via SSL (Secure Sockets Layer) with the CPMC servers, they enter their data through the CPMC web portal. The underlying data architecture for the CPMC study has been designed to provide the highest degree of security and confidentiality for the participants of the study. Any personally identifying information is stored on a separate server in a separate database from where genomic results/personalized risk reports are stored. All data managed by the CPMC, with the exception of genomic data, is stored in Microsoft SQL Server databases. SQL Server is a comprehensive database platform providing enterprise-class data management with integrated business intelligence tools. The SQL Server database engine provides secure, reliable storage of relational data and enables more facilitated management of highly available, performance-driven data applications.
Coriell’s state-of-the-art Data Center, newly rebuilt in 2009, includes inline cooling, redundant power, and mid-term battery backup capabilities. The operations of this center are guided by contemporary and precise policies and procedures that assure the confidentiality and integrity of the data generated from the CPMC study. All data in Coriell’s infrastructure are stored with multiple redundancies both on-site and off-site. In addition to nightly operational backups, Coriell maintains full system backups as ‘disaster recovery’ contingencies in the event of a catastrophic site failure.