The ability to share data between research projects is an important goal for the management of phenotypicand genotypic data in a large and diverse clinical and basic research environment such as is found atPartners Healthcare Inc. The infrastructure to support data sharing in this environment, and specifically theDriving Biology Progects (DPB's) that serve to promote focused and real-world development, has as it'sspecific aims: (1) Support the standardization of data and data structures used in the DBP's. (2) Allow datathat is collected by the investigators in a standardized format to be imported into a central repository. (3)Maintain a central repository with research and hospital data. (4) Support precise patient identification toallow the sharing of data regarding specific research subjects between various databases, including the mainhospital clinical repositories. (5) Support the aggregation and unified computation of phenotypic andgenotypic research subject data by allowing a common vocabulary to map to various phenotypic andgenotypic concepts. (6) Support the ownership of research data through a model that allows centralizedcomputation, yet ensures the investigator that data will be within their control. (7) Allow centralizedrepositories at institutions to communicate in a standardized fashion with other institutions to allow globalqueries for aggregate numbers. (8) Support a data analyst who can work with the DBP's to develop datamodels and coding vocabularies.The central repository of study patient data forms the core of the infrastructure. The architecture of thisrepository has been determined by many years of experience in its operation. But to function effectively inany institution, the additional functionality of a master patient index, loosely coupled vocabulary manager,and data ownership protection will need to be added. The uploading of study specific data into thisrepository in a high throughput fashion will be the essential end result of the infrastructure management.
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