Paper 7

Information Systems for Federated Biobanks

Authors: Johann Eder, Claus Dabringer, Michaela Schicho, and Konrad Stark

Volume 1 (2009)

Abstract

Biobanks store and manage collections of biological material (tissue, blood, cell cultures, etc.) and manage the medical and biological data associated with this material. Biobanks are invaluable resources for medical research. The diversity, heterogeneity and volatility of the domain make information systems for biobanks a challenging application domain. Information systems for biobanks are foremost integration projects of heterogenous fast evolving sources. The European project BBMRI (Biobanking and Biomolecular Resources Research Infrastructure) has the mission to network European biobanks, to improve resources for biomedical research, an thus contribute to improve the prevention, diagnosis and treatment of diseases. We present the challenges for interconnecting European biobanks and harmonizing their data. We discuss some solutions for searching for biological resources, for managing provenance and guaranteeing anonymity of donors. Furthermore, we show how to support the exploitation of such a resource in medical studies with specialized CSCW tools.

Keywords: biobanks, data quality and provenance, anonymity, heterogeneity, federation, CSCW.