Bone disorder, referral system, web portal  

Bone specialists' hi-tech answer to patient care

5 January 2005

Bone-disorder experts from across Europe have turned to the web in a unique alliance that will improve patient care.

The European Skeletal Dysplasia Network (ESDN), which was developed by The University of Manchester, links eight institutions in six different countries by means of a secure web portal.

The hi-tech referral system means a patient, say, in Italy could have their case referred to a bone specialist in Belgium and a genetics expert in Manchester, while a laboratory in Switzerland confirms the diagnosis.

The network allows a doctor to submit a description and x-ray images of their patient to the portal, which are then referred to a group of specialists connected through an electronic discussion forum who can consider the case.

"There is no one centre with all the necessary experience or facilities to cope with the diagnosis of so many types of bone disorders," said project administrator Jacky Taylor, who is based at the National Genetics Reference Laboratory in Manchester.

"There are more than 200 different kinds of complaints ranging from mild to life-threatening, so clinicians face significant problems identifying which condition their patient has.

"This web-based, case-management system overcomes geographical barriers and brings together the scarce clinical resources for these rare conditions.

"By providing efficient access to a pan-European network of experts and genetic-testing facilities, doctors can make accurate diagnoses enabling patients to receive the best treatment for their particular condition.

"The system is completely novel and the successful delivery of the complex IT project is thanks to the collaborative nature of ESDN itself."

The technology behind the system was provided by Certus Technology, a young IT company with engineering and consulting experience.

Dr Mike Briggs, of the Wellcome Trust Centre For Cell Matrix Research in Manchester, heads the eight partner centres, which in the UK also include The University of Newcastle-upon-Tyne and the Central Manchester NHS Trust .

He said: " Now ESDN has a system that works, the trick is to broaden its reach. There are significant barriers to its adoption; the general uptake of IT in medicine is a problem."

Dr Michael Wright, of the Institute of Human Genetics at The University of Newcastle-upon-Tyne, added: "This is a system that works the way we work. What is interesting is that because of the system, conversations about cases are taking place that otherwise wouldn't.

"The information technology is facilitating the diagnosis of patients and, significantly, is bringing together this multidisciplinary group in a way that is improving understanding."

The ESDN network includes:

  • Wellcome Trust for Cell Matrix Research, School of Biological Sciences, University of Manchester, UK: http://www.biomed.man.ac.uk/

  • National Genetics Reference Laboratory (Manchester), Regional Genetics Services, St. Mary's Hospital, Manchester, UK: http://www.ngrl.org.uk/Manchester

  • Institute of Human Genetics, International Centre for Life, University of Newcastle, UK: http://www.ncl.ac.uk/ihg

  • Department of Medical Genetics, University Hospital of Gent, Belgium

  • Hopital Necker-Enfants Malades, Paris, France

  • Division of Molecular Pediatrics, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland: http://www.pediatrics.ch

  • Children’s Hospital, Johannes-Gutenberg University of Mainz, Germany

  • Department of Medical Biochemistry, University of Oulu, Finland

 

 

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