South East Genomics

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Patient ambassadors

How can you get involved?

There are several ways that patients, family members and the public can get involved with the South East Genomic Service. These include:
  • Join our Patient and Public Involvement (PPI) group
  • Become one of our Genomic Patient Ambassadors

Patient and Public Involvement (PPI) group

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The PPI group will play an important role in the provision of the new NHS Genomic Medicine Service and ensure the interests of patients are always at the centre. Members will help guide the planning of the new service and how genomic medicine is used in the NHS in the future.

Please email us if you are interested in joining the PPI Group. In your email, it would be great if you could briefly outline why you are interested in getting involved. Please also include if you are involved in the 100,000 Genomes Project. Don’t forget to include your name and contact details!

Genomic Patient Ambassadors

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The Patient Ambassadors will play a key role in the provision of the new NHS Genomic Medicine Service and ensure the interests of patients are always at the centre. Ambassadors will act as representatives of the wider PPI group and work closely with the GLH Leads and other staff to plan the new service and how genomic medicine is used in the NHS in the future. 

Please email us if you are interested in becoming a Patient Ambassador. In your email, it would be great if you could outline why you are interested in this role. Please also include if you are involved in the 100,000 Genomes Project. Don’t forget to include your name and contact details!

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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.