UKGTN – 10 Years supporting genetic testing

Jacquie Westwood UK Genetic Testing Network

UKGTN Reports

Approving UKGTN member labs who provide quality assured tests

Acknowledgment – UKGTN Laboratory Membership & Audit working group steered by Ann Curtis and Roger Mountford

Evaluating and recommending new genetic tests Acknowledgment – Concept, Ron Zimmern; Implementation,

UKGTN Genetic Test Evaluation working group steered by Fiona Stewart

Demonstrating cost efficiencies elsewhere in the care pathway resulting from new tests being available

Acknowledgment - Gene Dossier applicant clinicians and the laboratories

What has been delivered ?

The NHS Directory of Genetic Testing which lists the disorders and tests/genes recommended

Acknowledgment – Concept, Project Team; steered by Peter Farndon

Web site with an online data base showing which tests are available from the member laboratories

Acknowledgment – Concept, Project Team advised by Andrew Devereau & UKGTN Scientific Advisor; implemented through Certus Technologies

Innovated Testing Criteria to provide clinical guidance Acknowledgment – Concept Project Team; steered by UKGTN

Genetic Test Evaluation working group

What has been delivered ?

Recording lab activity using a consistent method to benchmark services

Acknowledgment – Concept Ann Curtis & UKGTN Scientific Advisor; steered by UKGTN Laboratory Membership & Audit working group, ACGS (previously CMGS & ACC) & UKGTN Project team

Links with specialised commissioners to improve commissioning mechanisms to benefit equity of provision

Acknowledgment – UKGTN Commissioning Support working group & Patient Representative Groups

Annual review of genetic testing rates Acknowledgement - Concept UKGTN Public Health Advisor; steered

by UKGTN Laboratory Membership & Audit working group and implemented through the London Health Observatory

What has been delivered ?

Reviewing emerging technologies, e.g. arrayCGH, and their ability to improve diagnosis for patients

Acknowledgements – Patient Groups, International expertise, National Genetics Reference Laboratories, PHG Foundation & UKGTN Clinical Advisor; steered by UKGTN Commissioning Support working group

Translating laboratory research to introduce new testing methods such as NIPD and gene panel tests

Acknowledgment – Concept UKGTN Advisors (Public Health, Clinical & Scientific); steered by UKGTN Genetic Test Evaluation working group, UKGTN Laboratory Membership & Audit working group and project team

What has been delivered ?

Support commissioning to improve equity, service provision, quality, information & translation of research into service

Improve diagnostic care pathways & realise best value recognising that NHS will have no increase in resources inclusive to 2020.

Provide guidance to enable genetics to be integrated within other specialities

Report Quality Assurance results Implement a new web site to improve

usability and information to patients and the public

UKGTN Next steps include

Equity of access for Patients Collaboration rather than competition Economic imperative in a period of no

growth Excellence in diagnostic service provision Transparency about quality assurance &

awareness of Regulation International exchange Keeping pace with Change

UKGTN – Ethos

UKGTN Members UKGTN Project team Working Group Chairs Expert advisors UKGTN Clinical & Scientific Advisory Group DH Professional Groups Former National Genetic Reference Laboratories PHG Foundation London Health Observatory NSCT

Thanks to