european network for adrenal tumors


Enabling Secure, Distributed Collaborations for Adrenal Tumor Research

24 Mar 2010 13:00 | Anonymous
Anthony Stell, Richard Sinnott, Jipu Jiang


Many e-Health strategies rely on the secure integration of datasets that

have previously resided in isolated locations, but can now in principle be accessed
over the Internet. Of paramount importance in the health domain is the need for the
security and privacy of data that is transmitted across these networks. One such
collaboration, which spans several specialist centres across France, Germany, Italy
and the UK, is ENSAT – the European Network for the Study of Adrenal Tumors.
The rarity of the tumors under study means the value of accessing, aggregating and
comparing data from many centres is great indeed. However this is especially
challenging given that ENSAT require clinical and genomic data to be seamlessly
linked, but in such a way that the information governance, ethics and privacy
concerns of the patients and associated stakeholders involved are visibly satisfied.
Key to this is the clear separation of clinical and genomic data sets and support for
rigorous patient-identity protecting access control. This is especially challenging
when such data sets exist across different organisational boundaries. In this paper
we describe a prototype solution offering a security-oriented tailored portal
supported by a layered encryption-driven linkage technology (VANGUARD) that
offers precisely such patient-privacy protecting capabilities. We describe the
architecture, implementation and use to date of this facility to support the ENSAT
adrenal cancer research network
  © ENS@T - European Network for the Study of Adrenal Tumors 2002 - 2012
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