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We hope you're enjoying the summer, and that you manage to get some much deserved leave this month.
In this edition we give an update on our Solid Cancer Genomic Network of Excellence bid, welcome our new GMSA Medical Lead, celebrate 45 years of Clinical Genetics at NUH, introduce GeNotes Paediatrics and Primary Care, update on a new email for our Cambridge Lab, welcome three new PPV Panel Members plus much more.
We also have the usual events, training and education opportunities and links to useful resources. We welcome feedback and suggestions for what you would like to see more of. Please email us here or complete the poll at the end of this newsletter. | |
Update on Genomic Network of Excellence bid | | |
This month we sent an update to stakeholders across the East region which gave an overview of the Solid Cancer Network of Excellence (NoE) bid which we submitted to NHSE at the end of last month. You can read our update here. | |
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Welcome to our new East GMSA Medical Lead | |
This month we welcome Professor Guruprasad P. Aithal as Medical Lead for the East Genomic Medicine Service Alliance (GMSA) - one half of East Genomics along with our Genomic Laboratory Hub.
Guru is Professor of Hepatology and Division Head for the Nottingham Digestive Diseases Centre, School of Medicine.
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He is also the Gastrointestinal & Liver Disorder Theme Lead for the National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre at Nottingham University Hospitals NHS Trust and the University of Nottingham.
You can hear Guru on the Nottingham University Hospitals Clinical Research Podcast from a Diabetes Week special edition back in 2021, and watch a brief intro video for his GMSA Medical Lead role below. | |
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Celebrating 45 years of Clinical Genetics at NUH | |
In the latest edition of Nottingham University Hospitals' Together magazine we were delighted to contribute a page (24) on the NUH Clinical Genetics team, who have gone through many changes since the department was established in 1977. You can read the magazine here.
If you would like to work with us on a story or feature for your own Trust comms, please get in touch with our Comms Lead at ian.kingsbury@nuh.nhs.uk | | | |
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GeNotes Paediatrics and Primary Care are here... | |
GeNotes – the Genomics Education Programme resource to support clinicians in accessing genomic testing – has welcomed two new specialties to its growing collection.
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The GeNotes Paediatrics and primary care collections have been developed in collaboration with clinical experts across the NHS and cover when, why and how to request genomic testing. Underpinning these In the Clinic scenarios is the Knowledge Hub, packed with bitesize resources on the fundamentals of genomics, conditions, therapies, technologies and more – perfect for busy clinicians who want to continue their learning.
They join existing specialties oncology and fetal and women’s health. Working groups are developing content for a range of other specialties – from endocrinology and cardiology to pharmacogenomics and mental health. If you think your speciality should be included or you’re interested in getting involved, please get in touch.
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GMSA Lead Nurse hits the road! | |
Our Lead Nurse Vicky Carr will be giving an introduction to genomics and how CNS’ across specialties can be involved at a CNS Development Day hosted by Nottingham University Hospitals (NUH).
The event takes place at Trent Vineyard on 18 September. Enquiries about the event should be directed to Jenny Parrish, CNS Project Lead at NUH. | | | |
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If you would like to invite us to speak and/or have an information stand at an event, conference, or study day, please email Communications Lead ian.kingsbury@nuh.nhs.uk to discuss this further. | | | |
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You've earned your stripes | |
Thank you to all of our colleagues who took part in the #ShowYourStripes initiative to raise awareness for Rare Disease Day (back in February) and the work of Medics4RareDiseases.
Colleagues across Cambridge University Hospitals in particular went the extra mile and have been awarded the 'Best Hospital Effort' by M4RD.
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#GenomicsConversation videos | |
Thanks to all who took part in, or in some way engaged with #GenomicsConversation week, which ran from 26-30 June. We have created a YouTube playlist bringing together some of the clinician and patient stories that we shared via our channels throughout the week. You can continue the genomics conversation by taking a look at the wide range of courses, resources, videos and podcasts available on the Genomics Education Programme website. | |
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Welcome to our new PPV Panel members | |
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Karine Latter recently retired from the NHS, where she worked as a nurse for 45 years, across clinical care, leadership, research and education. Having been diagnosed with bowel cancer and Lynch Syndrome in 2020, Karine has a personal interest in using patient voices to inform service and patient experience improvement, particularly access to genetic testing, screening and outcomes. | | | |
Loretta MacInnes is a marketing and policy expert, and a writer. She worked in health care and tech for many years before becoming ill and eventually being diagnosed with Fabry, a rare disease. This also affects two of her children. Having experience of the lack of support for young adults, particularly around mental health, Loretta set up her own website My Fabry Disease to advocate for people with rare disease. Loretta is a Trustee of CamRARE and a member of the PAGE Group. | | | |
Helen Canning was a science teacher for 15 years before her career came to an end when she was diagnosed with stage 4 colorectal cancer (BRAF mutation) at the of age 38 in 2021. Since being diagnosed with this rare form, Helen has come to believe that the patient voice is vitally important in medical research and development. She is a a member of the East Of England Cancer Alliance, social media volunteer for Bowel Cancer UK, and is a founding member of the campaign group Breaking BRAF (Instagram and Facebook). | | | |
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Genomics England Committee Recruitment | |
Genomics England are looking for a new Chair and members of their Access Review Committee (ARC). The committee is being refreshed to reflect progress beyond 100,000 Genomes Project and into the NHS Genomic Medicine Service, new cohorts, and the novel ethics and data access/governance issues that come with progressing genomic medicine at pace and scale. Read this news article for more information and for links to the application process. The deadline for applications is 19 August. Anyone interested is welcome to get in touch with Director of Ethics, Natalie Banner, to discuss.
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Genomics: Supporting Workforce data collection | |
The NHSE Genomics Medicine Service team are seeking to understand more widely the growth of the supporting workforce and how they are aiding delivery of the Genomics Medicine Service.
We have been asked to capture roles which are primarily Genomics focussed. Please take a look at this spreadsheet and, if yours is one such role, please complete the spreadsheet for you role and return it to East GMSA Programme Manager Katy Blakely by Tuesday 15 August 2023. If you have any queries, please do not hesitate to contact the Genomics Unit. | |
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Email change for Cambridge Genomics Laboratory | |
The contact email address for enquiries to our Cambridge Genomics Laboratory has changed to cuh.geneticslaboratories@nhs.net
This information will be progressively updated on all our other documentation and website during the next week or so. If there are any queries or difficulties please do continue to contact the laboratory by telephone on 01223 348866. | |
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Award nominations recognise East Genomics staff | |
Congratulations to East GLH and GMSA staff on receiving nominations in the Cambridge University Hospitals (CUH) Annual Awards 2023.
Nominations in the Excellent category – for delivering improvements for patients and each other – included: - The whole team at the GLH
- GLH Education and Training team: Gemma Chandratillake, Francesca Tonini and Rejoice Muduwa
Two members of staff received individual nominations in the Excellent category: - Dr Mike Eden (Pathology Lead, GMSA)
- Dr Jim Watkins (Molecular Pathology Clinical Lead, GLH)
In addition, nominations in the Safe Category – for outstanding contribution to patient and staff safety – included:
- Ruby Denton-Cowell (Trainee Genetic Technologist, GLH)
- Isabelle Delon (Lead Clinical Scientist – Rare Disease Paediatrics Team, GLH)
Now in its second year, the CUH awards programme celebrates the achievements of staff. Following nominations, shortlisting will take place with a final ceremony in September. More information on the 'Public Choice' award can be found here. | |
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Events, education and training | | |
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Our popular Genomics BITEs series of webinars aimed at nurses, midwives and allied health professionals has taken a summer break, but will be back in September with a session on prenatal genetic testing, otherwise known Prenatal Exome Sequencing (pES) or R21 testing. You can register your free place here. | |
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In the meantime you catch up on previous sessions below:
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Final Cystic Renal Disease workshop | |
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Anyone with an interest in Cystic Renal Disease and kidney pathways is invited to attend our final Cystic Renal Disease Workshop on 13 September 2023. The agenda will cover a variety of updates including a patient story, GeNotes content development, outcomes from the project, and guest speakers including the PKD Charity.
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| Short Genomic e-learning modules | |
At NHS East Genomics we have developed four e-learning modules hosted on an online learning portal developed jointly by Cambridge University Health Partnership (CUHP) and Addenbrookes Postgraduate Medical Centre (PGMC): You will need an NHS email address in order to register for an account to access the courses. | |
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| Endocrine Genetic Testing Training | |
A new one-day training event, Endocrine Genetic Testing, will take place on 12 September in Manchester. Endorsed by the Society for Endocrinology, the day will provide those working in endocrinology with training on how to use genomic information in routine clinical pathways and to better support patients with hereditary endocrine disorders. For further details, or to book your place, visit the event page. | |
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National Lynch Syndrome Workshops | |
| The following national Lynch Syndrome project workshops for colorectal cancer and endometrial cancer multidisciplinary teams (MDTs) are open for booking. Click the image to visit that workshop page. | |
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A further national Lynch Syndrome project workshop on 11 September is aimed at nurses, and is on the subject of mainstreaming germline genetic testing and setting-up new nurse-led clinics. Find out more here.
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| CamRARE's 6th annual RAREsummit | |
Cambridge Rare Disease Network are holding their sixth annual RAREsummit on 12 October 2023. This flagship CamRARE event brings together over 300 great minds in rare diseases - including patients, industry representatives, healthcare professionals and researchers - to make connections, exchange ideas and openly debate possibilities.
We are pleased to say we have an information stand at the event. Look out for Dr Kate Downes, Genomic Laboratory Hub Lead Scientist for Rare and Inherited Disease, who will be on hand to answer any questions you might have. You can view the event website to find out more, including the programme and speakers, and register your place. | |
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| Master’s in Genomic Medicine | |
The National Genomics Education programme has announced that funding applications are now open for those wishing to further develop their knowledge of genomics through the popular Master’s in Genomic Medicine framework. Seven partner universities are delivering a continuing, co-ordinated programme of genomics education. NHS employees in England can now apply for funding to undertake up to four individual CPPD modules that start before 31 March 2024. Find out more on the Master’s webpage. | |
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Niche to Necessity webinar: The Circle of Life | |
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The next in a series of North West and North East & Yorkshire GMSA 'Niche to Necessity' webinars takes place via MS Teams on 19 September 2023 at 2pm.
Much like our own Genomics BITEs series, this webinar will explore genomics and its use within nursing, midwifery and health visiting, and is designed for colleagues who have no, little or a general awareness of genomics and the opportunities it brings, as well as highlighting what further support or information they will need for their own practice. There will also be elements of myth-busting too! Find out more and book your place. | |
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- Enquiries regarding any specific genomic tests should be directed to East Genomic Laboratory Hub (East GLH) on nuh.geneticslaboratories@nhs.net
- Enquiries in relation to transformational projects and wider engagement initiatives should be directed to the East Genomic Medicine Service Alliance (East GMSA) on egmsa@nnuh.nhs.uk
You can follow us on Twitter, connect with us on LinkedIn and subscribe to our YouTube account. To share future newsletter content or suggestions please email ian.kingsbury@nuh.nhs.uk
If you have been forwarded this email by a colleague and would like to be on our mailing list, please register here or email us requesting to be added. | |
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