The UKGTN Clinical and Scientific Advisory Group (CSAG) met on September 26th 2013 and has recommended 60 new tests for NHS service from April 2014 of which:

• 53 are prescribed services and 7 are within Highly Specialised Services
• 18 were evaluated through the very rare disease process (less than 20 index cases a year and less than £5000 annual costs for index cases)
• 12 are new panel tests that use Next Generation Sequencing (NGS)

The new tests will be published on the UKGTN website by the end of December 2013.

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The new UKGTN website went live on 29th July 2013. Liquid Light Digital Ltd won the tender to redevelop the website. The website hosts a database of tests to enable users to locate a genetic tests offered through the network of member laboratories.  The database includes an intuitive test service price comparison.  The Gene Dossiers and Testing Criteria are easily accessible as separate areas of the website and includes a filter by specialty.  A resources section provides information on UKGTN activities and outputs.

UKGTN commissioned the PHG Foundation to organise this event that took place on 26th February 2013 in London aimed at informing NHS consultant neurologists and specialist registrars in neurology of UKGTN genetic test resources and processes.  A summary report of the event was published in July 2013 and the presentations from the workshop are available to download from the UKGTN website.

The UKGTN Development Working Group, chaired by Jo Whittaker, has developed a guide to centres with specialist expertise for rare genetic disorders. 

The key findings are:

• There are more than 3700 joint clinics being held
• Less than 10% of disorders have more than three labs providing testing for specific disorders
• 27 laboratories are the unique providers for 69% of the disorders on the Directory
• The specific laboratories with specialist expertise in different medical areas

Download Guide here

The NHS England Board announced in July 2013 that UKGTN has been preserved in the transition period and is now hosted by North West London Commissioning Support Unit and works closely with the CRG.  The CRG refers to the Medical Genetics Clinical Reference Group that is chaired by Professor Frances Flinter.  Read More

UKGTN are presenting the new test evaluations to NHS England in October 2013 in preparation for the clinical priorities assessment process.  UKGTN are preparing to assign all recommended tests to CRGs to facilitate clarification clinical genetics tests being reimbursed by the appropriate specialty.