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Cystic Renal Disease: Genomics Workshops

We are running a series of online workshops from March 2023 on Cystic Renal Disease, to get views on a model of nursing practice that enables equitable access and delivery of genomic care for patients with Cystic Renal Disease.

The workshops are open to anyone working a renal pathway, including nurses and CNSs, nephrologists, genetic counsellors, and clinical geneticists in renal clinics.

No genomics knowledge is needed. Please join any number of sessions you like, and note there is no expectation that you stay for the full duration if you have clinical commitments.

If you are interested in attending, please contact victoria.carr6@nhs.netor pauline.simpson@nnuh.nhs.uk

The workshops will cover different content.
Date Time Delivery
Date 1 March 2023 Time 11am - 2pm Delivery MS Teams
Date 7 March 2023 Time 1pm - 4pm Delivery MS Teams
Date 20 March 2023 Time 1pm - 4pm Delivery MS Teams
Date 28 March 2023 Time 1pm - 4pm Delivery MS Teams
Date TBC April 2023 Time TBC Delivery MS Teams
Flyer for Cystic Kidney Disease workshops
East GMSA Cystic Renal Disease workshops flyer, February to March 2023

Cystic Renal Disease survey

We also have a short (1 minute) survey to help guide our understanding of the provision of services for patients across England. If you work into any part of renal pathways within your Trust, this survey is aimed at you.

You an take the short survey here (opens in a new tab).

NationNational Nursing and Midwifery Genomics Transformation Programme

National Nursing and Midwifery Pathways

The National Nursing and Midwifery Genomics Transformation Programme aims to integrate genomics into mainstream nursing and midwifery practice across the NHS in England. The 7 care pathways above are our starting point.

Over the next 2 years, the programme will engage with hundreds of nurses and midwives, as well as patients and charities to support the development of knowledge and skills in genomics, define exemplar genomic pathways and accelerate the adoption of best practice.  This will help improve equity of access for our patients across the country irrespective of where they live or where they are cared for.

By embedding genomic medicine into routine clinical care, we can deliver faster and more accurate diagnoses, personalised treatment, and prevention through early detection.

Lung Cancer

NHS North East and Yorkshire GMS are leading work on developing a new Lung Cancer Pathway, which will be launched in 2023. We will provide more information at the time of launch.

Cystic Renal Disease

At East GMSA we are focussing on the Polycystic Kidney Disease project which we will start in January 2023. Autosomal dominant polycystic kidney disease leads to cysts in the kidneys and liver, and sometimes pancreas. 

It causes renal pain, reduced renal function, high blood pressure, renal stones and 50% of those affected will develop renal failure by the time they are 60 years old.  It affects between 1 in 1,000 – 2,500.  Genomic testing is important to help plan more appropriate care pathways and inform reproductive choices for those affected by autosomal dominant polycystic kidney disease and for live donors, and to inform reproductive choices. Treatments can reduce symptoms and the risk of complications.

Polycystic kidney disease affects people across the whole life-span so we are looking for nurses and midwives to join us to take our work forward.  Please contact us if you would like to contribute to this workstream: Victoria.carr6@nhs.net.