UKGTN Working Groups

Working groups support the work of the UKGTN in order to deliver the annual work programmes agreed by CSAG in March each year. There are four working groups:

Rare Disease Service Improvement Working Group

  • identify commissioning mechanisms, procedures and policies to facilitate good commissioning processes for genetic testing that fit within NHS systems for specialised commissioning
  • consider the implications of commissioning policy initiatives and outputs from the working groups 
  • undertake projects to inform those initiatives in collaboration with other partners as required
  • put in place mechanisms to influence change in commissioning policy

Genetic Test Evaluation Working Group

  • Evaluate and recommend tests to be included in or deleted from the directory in a timely manner
  • Ensure testing criteria and testing criteria forms within the Gene Dossier process are kept under review
  • In light of new evidence, request laboratories complete a gene dossier including testing criteria for tests already listed on the Directory
  • Keep the Gene Dossier mechanism and documentation under review and undertake audits as required

Laboratory Membership and Audit Working Group

  • Review membership applications and ongoing compliance to the laboratory membership criteria
  • Assess and make recommendations for new laboratory applications
  • Review laboratory membership criteria and procedures as required
  • Develop methods and documentation to collect laboratory data
  • Produce annual reports on monitoring including measures of access to testing services
  • Review work load currencies for laboratory genetics
  • Review work load categories assigned to new tests approved through the gene dossier process
  • Review developments in data standards and data sets for genetics
  • Review and make recommendations on the UKGTN website with particular regard to the online database

Development Working Group

This group will be convened to undertake specific projects arising from policy reviews. Membership will be flexible to fulfil the expertise required for specific projects.

The first project undertaken is to produce a UKGTN guide to centres with specialist expertise for rare genetic disorders. This work commenced in 2012. The project was initiated by Genetic Alliance UK to assist patients in finding expert advice for their conditions and to aid clinicians from a broad range of medical specialties to collaborate with colleagues who have particular specialist expertise, to enable them to determine the best care for their patients.  The guide will provide a national overview of laboratory provisison and lists the clinics and tests available by specialty (cardiolgy, neurology) in two sections and adult and paediatric services.