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NHS set to deliver world-leading genomics project in fight against cancer and rare diseases

NHS England has today (Monday, 22 December 2014) announced eleven centres across the country that will lead the way in delivering the 100,000 Genomes Project.

The three-year project, launched by the Prime Minister earlier this year, will transform diagnosis and treatment for patients with cancer and rare diseases.

The initiative involves collecting and decoding 100,000 human genomes – complete sets of people’s genes – that will enable scientists and doctors to understand more about specific conditions.

The project has the potential to transform the future of healthcare. It could improve the prediction and prevention of disease, enable new and more precise diagnostic tests, and allow personalisation of drugs and other treatments to specific genetic variants.

Some participating patients will benefit because a conclusive diagnosis can be reached for a rare and inherited disease more quickly, or because a treatment for cancer can be targeted at the particular genetic change that is present in the cancer. But for a number of patients, the benefit will be in the improvement in our knowledge of the influence of genetics on disease and how it is expressed in an individual, how other people can be helped with similar diseases in the future, and how different types of tests can be developed to detect changes beyond the genome.

The 11 designated Genomic Medicine Centres (GMCs) in this wave 1 selection process are based across the country, covering areas including Greater Manchester, the North West coast, Oxford, Birmingham and the West Midlands, Southampton, London, Cambridge and the East of England, Exeter and the South West Peninsula, and the North East. Over the lifetime of the project NHS England’s ambition is to secure over 100 participating NHS trusts. A further wave of GMCs will be procured to ensure that there is comprehensive coverage across the NHS in England.

The GMCs have a track-record of providing excellence in genomic services and have been evaluated by NHS England to ensure they meet the requirements to deliver the project.

It is anticipated that around 75,000 people will be involved, which will include some patients with life threatening and debilitating disease. Recruitment to the project will begin from 2nd February 2015.

After samples are collected, they will be sent securely to Illumina who have been procured by Genomics England to sequence the whole genome and to analyse it. Results will be sent back to the NHS for validation and clinical action.

Professor Sir Bruce Keogh, NHS England’s National Medical Director, said: “This is an achievable ambition which positions Britain to unlock longstanding mysteries of disease on behalf of humankind. Embracing genomics will position us at the forefront of science and make the NHS the most scientifically advanced healthcare system in the world. This is the start of a unique, exciting journey that will bring benefits for patients, for the NHS and for society at large.”

Professor Sue Hill, the Chief Scientific Officer for England, who chaired the team evaluating the various applicant GMCs said: “The NHS has risen to both the challenge and opportunity of delivering its contribution to the 100,000 whole genomes project in the most extraordinary and unparalleled way. Locally in the NHS, there has been clearly demonstrated engagement and involvement of senior managers, clinical teams, clinical genetic and molecular pathology laboratories and critically patients and the public, all committed to using the science of whole genome sequencing to making a real and lasting difference for patient benefit.”

Life Sciences Minister George Freeman added: “Our understanding of genomics is transforming the landscape for disease diagnosis and medicines research. We want to make the UK the best place in the world to design and discover 21st century medicines which is why we have invested in the 100,000 Genomes Project. We also want to ensure NHS patients benefit which is why we have now selected NHS hospitals to help us sequence genomes on an unprecedented scale and bring better treatments to people with cancers and rare diseases for generations to come.”

Professor Mark Caulfield, Chief Scientist at Genomics England, said: “The creation of the new NHS Genomic Medicine Centres will play a key role in bringing together researchers, NHS clinicians and trainees to work on whole genome data that has never been collected on this scale before.  We have a clear goal of accelerating the findings from the programme back into mainstream healthcare at the fastest possible pace, meaning more rapid results for patients.”

The first wave of 11 designated Genomic Medicine Centres are:

  • East of England NHS GMC – designated for both cancer and rare disease. Led by Cambridge University Hospitals NHS Foundation Trust.
  • South London NHS GMC – designated for both cancer and rare disease. Led by Guy’s and St Thomas’ NHS Foundation Trust.
  • North West Coast NHS GMC – designated for both cancer and rare disease. Led by Liverpool Women’s NHS Foundation Trust.
  • Greater Manchester NHS GMC – designated for both cancer and rare disease. Led by Central Manchester University Hospitals NHS Foundation Trust.
  • University College London Partners NHS GMC – designated for both cancer and rare disease. Led by Great Ormond Street Hospital NHS Foundation Trust.
  • North East and North Cumbria NHS GMC – designated GMC for rare disease only. Led by The Newcastle upon Tyne Hospitals NHS Foundation Trust.
  • Oxford NHS GMC – designated for both cancer and rare disease. Led by Oxford University Hospitals Foundation Trust.
  • South West Peninsula NHS GMC – designated for both cancer and rare disease. Led by Royal Devon & Exeter NHS Foundation Trust.
  • Wessex NHS GMC – designated for both cancer and rare disease. Led by University Hospital Southampton NHS Foundation Trust.
  • Imperial College Health Partners NHS GMC – designated for both cancer and rare disease. Led by Imperial College Healthcare NHS Trust.
  • West Midlands NHS GMC – designated for both cancer and rare disease. Led by University Hospitals Birmingham NHS Foundation Trust.

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6 comments

  1. Will Hidradenitus Supparativa be investigated further as a rare disease. Many men & women are suffering from this disease, myself included, people are losing their jobs with no support at all, Doctors & Nurses have never heard about this disease, i have had it since i was 15, not diagnosed until in my 30’s now at stage 3(am now 52) and having to have extensive surgery in Exeter. If i lose my job (i work in the NHS) what help would i be entitled to? This disease really does need to be bought out into the open & people made aware of signs and symptoms, treatment etc. It is not just another (bloody) ABSCESS/ BOIL.

  2. niraj choudhary says:

    Dear sir
    I would like to participate in gemone study. I am from india.

  3. Michael Fowler says:

    Dear Sir / Madam

    I would like to partake in any of your experimental programs.

    I have suffered with chronic pain for over 20 years and currently have an internal Spinal Cord Stimulator, I take several medications and am keen to wean off but with no side effects.

    Kind regards

    Michael Fowler

  4. Anabela Pinto says:

    How do we apply to participate as volunteer DNA donors in Cambridge?

  5. Joanna Gilbert says:

    NHS set to deliver world-leading genomics project in fight against cancer and rare diseases

    I have Dercums which has taken 4 years to diagnose as there is no specialist residing in the UK. It is
    a very painful condition with various side symptoms such as IBS and migraines which also hinder a diagnoses for the bigger picture. I would be happy to be a part of this new genetic project if it was to help others in the future. I would not wish this on my worst enemy. I am 45 years old

  6. James says:

    Will the new centres be creating new jobs? When will these be advertised and where?