In this case the customer is a research consortium working with the same rare disease. They collaborate to recruit enough patients for a successful genome wide association (GWAS) project. They designed a standard patient questionnaire that all new patients should answer. For existing patients, the questionnaire is completed using existing information. In addition to the questionnaires, information about available DNA samples is shared.
Many of the sample and data collections are strictly controlled by data privacy rules and patient consents, which makes data sharing complicated. Partners in the consortium are allowed to analyze the data, but the data cannot be transferred outside the approved storage. This puts special requirements for the solutions for data protection and sharing.
BC Platforms has set up a hosted BC|GENOME platform to serve as the central database for the project. The platform is used to share the data and to perform all the data analyses. As all the commonly used data analysis tools are included, data analyses can be performed inside the system, without any need to export it. Using the unique BC|SAFEBOX, data can also be analyzed using a researcher’s own scripts and workflows without compromising the data security.