Integrating Clinical and Genetic Datasets: Nirvana or Pandora’s Box

A series of workshops to map the significant quality and usability
issues involved in collecting and aggregating large datasets from
different sources and for different purposes. The aim is to stimulate
multi-disciplinary discussion of the issues raised by such data integration.

This will consist of a Scoping Meeting on 9 May 2006 and a full workshop in September 2006 at the National e-Science Centre
(www.esi.ac.uk <http://www.esi.ac.uk>) for Generation Scotland
(www.generationscotland.org <http://www.generationscotland.org>) - a collaboration of the Scottish University medical schools, the NHS and
key research institutes including the NeSC, which aims to identify the
genetic basis of common complex diseases in the Scottish population.

The workshop series aims to answer a number of key questions including:

Does it make sense to put together datasets from different contexts, and
use them for different purposes?
What can be done to optimise the quality & the usability of data during
collection, analysis, aggregation or representation?
How should it be represented for different groups?
How can it be linked to other datasets to inform research - and would
ethics and confidentiality clauses allow this?
Will metadata, standards or protocols align with those of other national
and international genomic resources?

The workshop will involve a number of short presentations for discussion
around a (very large) table at the e-Science centre on 9th May to draw
on the experience and expertise of different groups including Genome
Quebec and the UK Biobank. There will be a larger more formal workshop in September to take forward some of the issues and look at a range of Grid-based approaches to this.

Confirmed International Speakers:
Professor Paul Burton (UK
Biobank)
Dr Isobel
Fortier (Director of Genome Quebec)

e-Health, e-Science, medical researchers and practitioners, database
specialists, information scientists, research nurses and the Generation
Scotland team are very warmly invited this initial mapping exercise.
The event and catering are free if you register on
www.nesc.ac.uk/esi/events/684/ <http://www.nesc.ac.uk/esi/events/684/>
shortly to allow them time to arrange catering. I apologise for the
short notice to make May 9th, and would very much appreciate it if you could forward this to other colleagues who might be interested.

Jenny Ure
Research Fellow
School of Informatics
Univ.of Edinburgh
www.neurogrid.ac.uk
www.generationscotland.org