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NDRS Lynch Syndrome Webinar

April 30 2021 @ 1:00 PM - 2:00 PM


To mark Bowel Cancer Awareness month this April, the National Disease Registration Service (NDRS) has organised a webinar to showcase the first ever national Lynch syndrome database created and how it can be used.


Lynch syndrome is a genetic condition that increases the lifetime risk of bowel cancer to up to 80%. Funded by Bowel Cancer UK, this national registry will help inform surveillance, treatment and care of people with the condition.


Speakers: Professor Sir John Burn (Newcastle University), Fiona McRonald and Steven Hardy (NDRS)


The webinar will cover:

  • Who we are and what we do
  • Diagnosis of Lynch syndrome
  • An overview of the dataset and how it’s being used to monitor and improve patient care
  • Findings from a study on how Lynch syndrome patients treated with aspirin had significantly reduced risk of bowel cancer
  • Next steps

Visit the event page to register.



United Kingdom
With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.