Clinical Guidance and Documentation

What can a whole genome sequencing test tell you? Even though the whole genome sequencing test looks at your whole genome, the test is focused on changes in genes related to cancer; it is not looking for changes in genes that cause other conditions.

The results take approximately 6 months to be discussed at a regional genomic meeting, which is attended by scientists, clinicians, and pathologists within the region.

The meeting discusses if the results correlate to the disease, if any academic papers relate to the information any research trials that linked to the results and if a clinical genetics referral needs to be made.

Please note that the test could fail to produce any actionable clinical information or could fail at some point through the process of obtaining the results.

For WGS test to be offered and be completed

Suspected solid tumour patient

FRESH sample of suspected tumour tissue needs to be sent to pathology.
25mm> or more (pathologist needs to check cellularity, tumour content)
North-east-and-Yorkshire-sample-requirements-for-whole-genome-sequencing.pdf (ney-genomics.org.uk) see end of eligibility for sample requirements.

Biopsy 16 Gauge or 18 Gauge, request extra 2 FRESH samples from the radiologist.
A bigger gauge with smaller sample is less likely to produce a successful result.

Haematology patient except Lymphoma

Bone marrow aspirate sample needs to be requested to go to HODS/HMDS within 72 hours of BMA (Bone Marrow Aspirate).

NEY-GLH-HaemOnc-WGS-Eligibilty-Nov-2021.pdf (ney-genomics.org.uk)

For ALL WGS Patients

PIS patient information genome-sequencing-cancer-patient-information-easy-read.pdf (england.nhs.uk), genome-sequencing-cancer-patient-information.pdf (england.nhs.uk) & Taking part | Genomics England

Do Record of Discussion (ROD) – please ensure that there is good understanding of all statements, that the test is optional, the research part can be withdrawn from, and the form can be accessed from Genomics England WGS documentation.

England » Genomics resources – ROD form link

Email ROD to local Genetics labs -
Sheffield - scn-tr.sdgs.oncology@nhs.net
Leeds - leedsth-tr.yneglh-wgsleeds@nhs.net

When emailing the ROD cc, the pathologist so the frozen sample is sent to the genetics labs.

Photocopy ROD form, give copy to patient, put in medical notes, and safely store hard copy.

Suspected Solid tumour patient – For Germline - Full EDTA Genetics labs (Sheffield Children Hospital or Leeds Genetics Lab) – with TOF (test order form)

Suspected haematology germline requires a skin biopsy FRESH (solution N/saline or HUM 1) send to local genetics labs within 72 hours.

NHS England » ¬Genomics resources - Must have test order form (TOF) form attached with germline.

Resources and useful Links

Requesting whole genome sequencing: information for clinicians - Genomics Education Programme (hee.nhs.uk)

Welcome to Genomics Education Programme - Genomics Education Programme (hee.nhs.uk)

Genomics 101: Genomics in Healthcare - Genomics Education Programme (hee.nhs.uk)

Genomic Medicine Service Alliance - North East and Yorkshire Genomic Medicine Service North East and Yorkshire Genomic Medicine Service (ney-genomics.org.uk)

Whole Genome Sequencing - North East and Yorkshire Genomic Medicine Service North East and Yorkshire Genomic Medicine Service (ney-genomics.org.uk)

WGS Documentation - North East and Yorkshire Genomic Medicine Service North East and Yorkshire Genomic Medicine Service (ney-genomics.org.uk)

Helpful resources

CCLG blood product support

Blood product support | CCLG - The Children & Young People's Cancer Association

CCLG guidance for supporting families in the community

Outreach Information (cclg.org.uk)

VIVO Biobank: How to bank a specimen

Visit VIVO Biobank - Home or email enquiries@vivobiobank.org

Clinical Guidance and Documentation

The Yorkshire and Humber Children’s, Teenage and Young Adult Cancer Clinical Network meets quarterly with representatives present from each centre in the network. Matters arising, service updates and project progress is amongst the discussion topics.

The network board meets annually to discuss upcoming workstreams and any high-level needs and changes within the network.

Key Clinical Guidance

Children's

Leeds Principal Treatment Centres and Paediatric Oncology Shared Care Units (Airedale, Calderdale and Huddersfield, Hull, and York and Scarborough)

Central Line Care

Febrile Neutropenia

Transfusion

Mouthcare/Mucositis

Photobiomodulation for prevention of oral mucositis in children and young people undergoing chemotherapy

Nausea and vomiting

Constipation

Analgesia

SACT administration guidelines

Pneumocystis

New patient investigations

Tumour Lysis Syndrome

Spinal Cord Compression

Raised intracranial pressure

Sheffield Principal Treatment Centres and Paediatric Oncology Shared Care Unit (North Lincolnshire and Goole)

Central Line Care

Febrile Neutropenia

Chemotherapy in the home

Transfusion

Mouthcare

Nausea and vomiting

Diarrhoea

Constipation

Analgesia

Nutrition

Tumour Lysis Syndrome

Spinal Cord Compression

Raised intracranial pressure

Mediastinal Mass

High WCC leukaemia

Teenage and Young Adults

Fertility preservation options for males and females

Sexual health advice (including contraception) prior to treatment

Transition

TYA PTC MDT Referral Pathway

Fertility Preservation Referral Form

Late Effects Referral Form

Long Term Follow Up Service Referral Form

Network Documentation

Yorkshire and Humber Cancer Clinical Network was previously known as Operational Delivery Network (ODN), therefore the title is present in documentation prior to 2024.

Children’s Network Meetings

14.01.2026

22.04.2026

15.01.2025

23.04.2025

16.07.2025

17.01.2024

17.04.2024

10.07.2024

25.01.2023

19.04.2023

19.07.2023

18.10.2023

26.01.2022

26.04.2022

13.07.2022

04.10.2022

Teenage and Young Adult Network Meetings

05.03.2026

06.03.2025

09.06.2025

02.09.2025

03.12.2025

06.03.2024

06.06.2024

03.12.2024

30.03.2023

06.06.2023

05.12.2023

03.03.2022

06.06.2022

14.09.2022

02.12.2022

24.11.2021