Welcome to the first edition of the West Midlands Genomic Medicine Centre (WMGMC) Newsletter - which will be landing in your inbox on a quarterly basis in future.
The aim the newsletter is to keep you all informed about the work of the WMGMC across the West Midlands in delivering the ground-breaking 100,000 Genomes Project.
Hopefully you will find the news and information included of value but your feedback would be most welcome.
If you have ideas or suggestions for anything you would like to see included in future editions, news items that you would like to submit for consideration, or any other comments, please contact WMGMC Communications Officer Lee Gibson on 0121 371 8106 or email Lee.Gibson@uhb.nhs.uk.
More than 2,000 participants have so far been recruited to the 100,000 Genomes project by the West Midlands Genomic Medicine Centre, with 12 of the 18 proposed partner NHS Trusts now open to recruit to either rare disease, cancer or both.
The Dudley Group NHS Foundation Trust, Wye Valley NHS Trust and Shrewsbury and Telford Hospital NHS Trust were the most recent Trusts to go live as we continue to widen the access our patients and their families across the region have to this programme.
All of the following WMGMC partner Trusts are now live to recruit to the project:
- University Hospitals Birmingham NHS Foundation Trust
- Birmingham Children's Hospital NHS Foundation Trust
- Birmingham Women's NHS Foundation Trust
- Heart of England NHS Foundation Trust
- The Royal Wolverhampton NHS Trust
- University Hospitals Coventry and Warwickshire NHS Trust
- University Hospitals of North Midlands NHS Trust
- The Royal Orthopaedic Hospital NHS Foundation Trust
- Sandwell and West Birmingham Hospitals NHS Trust
- The Dudley Group NHS Foundation Trust
- Shrewsbury and Telford Hospital NHS Trust
- Wye Valley NHS Trust
Official figures up to the week ending 30 September 2016 showed that WMGMC had contributed 2,221 samples with only two of the 13 Genomic Medicine Centres nationwide - North Thames and South London - having delivered more.
Of those samples collected in the West Midlands, 1,993 were for rare diseases and 228 for cancer.
Patients share their stories
Three patients recruited by local delivery partners within the WMGMC have shared their stories in recent months in order to help raise awareness of the 100,000 Genomes Project and encourage others to take part.
Mum Charlotte Williamson spoke to the Birmingham Mail about life with her 15-year-old son Toby, who has an undiagnosed genetic condition which has left him with the mental capacity of a nine-month old and physical ability of a one-year-old. Toby was recruited at Birmingham Women's Hospital and was the 1,000th patient to be signed up by WMGMC. Read Toby's story on the Birmingham Mail website here.
Nile Thackery-Lunn (pictured) was the first patient to be recruited by the team at The Royal Wolverhampton NHS Trust. Nile, aged seven, has a number of complex health issues which doctors have been unable to diagnose and his Mum, Kelly, spoke to the Wolverhampton Express and Star.
Renal cancer patient John Whitney was interviewed on BBC Radio Coventry and Warwickshire and featured in the Coventry Telegraph after he was recruited to the project at University Hospitals Coventry and Warwickshire.
Patients who are interested in finding out more about this programme can be directed to the WMGMC website (from October 17) or the Genomics England website, where there is a wealth of information including eligible conditions and criteria.
Cardiac consultant champions programme
University Hospitals Birmingham consultant cardiologist William Bradlow is an enthusiastic supporter of the 100,000 Genomes Project – with a number of his patients having been recruited to the initiative by the West Midlands Genomic Medicine Centre team.
Dr Bradlow specialises in treating patients with Hypertrophic Cardiomyopathy (HCM) – an inherited heart condition which is one of the rare diseases being targeted by the nationwide programme.
“There is a really strong motivation for these patients to get involved,” he said. “It’s a chronic condition which has serious, potentially fatal, complications so when the chance arose to be involved I was very keen.
“At present there is no cure for HCM, but treatments are available to help control the symptoms and prevent complications.
“Treatments for individuals will depend on how their heart is affected and what symptoms they have. If we can learn more about an individual’s condition, we are better placed to be able to personalise the care we give, which means a better outcome for the patient.
“I have been involved in the project for about a year now and for me it has been a really positive experience because I hadn’t had a huge amount of exposure to genetics or genomics before.”
As well as the potential for advances in diagnosis and treatment, Dr Bradlow says the project will also improve the way patient data and information is gathered, recorded and, potentially, shared.
“The things that I have found really powerful about the project are the fact that it’s encouraged us to organise information from disparate sources,” he went on. “That data in itself has got huge value for re-use in all sorts of other areas.
“We are looking to try to share relevant information in a way that respects privacy but also that doesn’t get in the way of patient care. It creates a tremendous resource for researchers in the future.
“This is the launch pad for the delivery of true personalised medicine which won’t just be for rare diseases and cancers, the next phase will be the more common conditions too.”
Project gives students real insight
Medical students in the West Midlands are gaining valuable experience through their involvement in the 100,000 Genomes Project. Forty students from the University of Birmingham have been enlisted to help with the initiative – gaining additional exposure to the clinical environment as well as knowledge of wide NHS functions.
Jenny Young, a 21-year-old third-year Medicine and Surgery student from Nottingham, worked full-time on the project for six months at Queen Elizabeth Hospital Birmingham and still helps out on a part-time basis around her studies.
Other students have been engaged on 12-month flexible clinical attachment in genomics medicine at University Hospitals Birmingham, Birmingham Women’s Hospital and Birmingham Children’s Hospital.
Jenny was the first student to recruit a patient to the project and believes that being involved will be of great benefit to her studies and subsequent career in medicine.
“It was a real privilege to be given the chance to work on the 100,000 genome project,” she said.
“It has given me a lot of amazing opportunities that I wouldn’t otherwise have had, such as sitting in on rare disease clinics, getting exposure to diseases and patient cohorts that I've never seen before.
“I've consented patients to the project, which has been fun and also given me great experience in gaining informed consent and the challenges of recruitment to research projects.
“I have also met lots of new people, members of staff and patients alike, and been able to practice clinical skills such as taking blood.
“Working with consultants, nurses and different clinical teams around the hospital as well as talking to patients has been a great experience and really built my confidence.
“I feel lucky to have had the chance to work with a fabulous and supportive multi-disciplinary team. The experience has been invaluable and I'm sure it will benefit me as both a medical student and in the future as a practicing clinician.”
Website set to go live
A dedicated WMGMC website has been under development for some time and will be live to view from Monday, October 17, 2016, offering information about the GMC and 100,000 Genomes Project to public, patients, participants, staff and stakeholders. To take a look visit www.westmidsgmc.nhs.uk from Monday, October 17.
The site is designed to be informative and user friendly but any feedback would be welcomed. Take a look at the site once live and email your views to WMGMC Communications Officer Lee Gibson with your comments.
WMGMC team members at University Hospitals Birmingham NHS Foundation Trust and The Royal Wolverhampton NHS Trust donned their denim on Jeans for Genes Day, on September 23, to help increase awareness of the 100,000 Genomes Project - as well as raising money for charity.
Jeans for Genes Day
At Royal Wolverhampton, WMGMC Genomics Ambassador Charlotte Hitchcock organised a stand selling Jeans for Genes day merchandise and held a raffle for a specially baked cake and other prizes. The effort raised more than £500 for Genetic Disorders UK.
Staff at University Hospitals Birmingham teamed up with the Queen Elizabeth Hospital Birmingham (QEHB) Charity to man a stand, pictured, in the atrium at the hospital, raising awareness of the project and collecting donations. A total of £481 was raised, which was split between Genetic Disorders UK and the QEHB-based Centre for Rare Diseases..
National Consent Training Day success
West Midlands GMC was proud to present the recent National Consent Training Day in conjunction with Health Education England’s Genomics Education Programme and Birmingham’s Women’s Hospital Clinical Genetics service.
The aim of the day was to introduce and demonstrate to trainers the use of a blended learning package designed to equip health professionals with the skills and knowledge required to recruit and consent patients to the 100,000 Genomics Project.
The blended learning package incorporated face to face training developed by BWNFT Clinical Genetics Service, used to train health professionals throughout the WM GMC, and the Genomics Education programmes ‘Preparing for the consent conversation’ online training course.
The day was very successful with over 30 attendees now ready to take the training back to nine GMC’s across the UK and a valuable networking opportunity for all to discuss best practice.
Free online course on whole genome sequencing – 23 January
Health Education England has teamed up with the international online course platform Futurelearn to provide a series of free courses as part of the Genomics Education Programme.
The first course is Whole Genome Sequencing: Decoding the Language of Life and Health which explores behind the scenes of this emerging healthcare technology
The course is designed for healthcare professionals with a limited knowledge of genomics and genome sequencing, who want to learn more about this new technology and the various ways in which it is being used in healthcare. The next course will start on January 23, 2017.
Learners will gain an insight into how whole genome sequencing works, as well as its varied uses within healthcare – from personalised treatment of cancer to cutting edge ‘walking labs’ tackling Ebola and Zika.
The course will last three weeks.
Boost your knowledge of genomics
The 100,000 Genomes Project has the potential to change clinical practice, bringing benefits to patients across the region and creating a legacy which embeds genomics in healthcare.
The Genomics Education Programme (GEP) has been established to support the delivery of the project but also to embed genomics throughout the NHS, ensuring staff in the wider healthcare system have the knowledge and skills to keep England at the forefront of genomics and personalised medicine worldwide.
The GEP is a £20 million, three-year programme supported by Health Education England.
Many online resources are available for NHS staff, including general courses, such as Introduction to Genomics and Introduction to Bioinformatics as well as tailored training such as Consent and Ethics, and more advanced learning.
In many cases the courses are either free or there is funding available for NHS staff wishing to enroll and certain modules can be undertaken as CPPD.
For more information visit www.westmidsgmc.nhs.uk/education (from October 17) or email GenomicsEducation@uhb.nhs.uk.
Improving Outcomes through Personalised Medicine
NHS England launched Improving Outcomes through Personalised Medicine at NHS Expo in September 2016. It sets out what is meant by personalised medicine, now and in the future, and the approach that NHS England will take, working with partners, so that we can embrace new approaches, while ensuring that ethical, equality and economic implications are fully understood and addressed. These developments are being led within NHS England by Professor Sue Hill, Chief Scientific Officer for England.
For more information, see the Personalised Medicine section of the NHS England website.
We have set up a WMGMC Communications calendar in order to try to promote and capture the engagement activity and events that are going on across our region in support of the 100,000 Genomes Project and West Midlands GMC.
If you have a meeting or an event that you would like to promote to the wider GMC simply email an invitation to WMGMCCommunications@uhb.nhs.uk. It will then be flagged up at Management and Operations Group meetings and, if appropriate, promoted via relevant internal and external channels, including social media.
Keep up to date between newsletters
Would you like to keep up to date with 100,000 Genomes Project news between WMGMC Newsletters?
If so, Genomics England send out weekly updates via email. To be added to the mailing list email firstname.lastname@example.org.
The weekly 'missive' is also available on the GMC Network on NHS Networks, which also contains much more useful information, resources and forums for GMC staff and stakeholders.
If not already registered, you can sign up to NHS Networks. Once registered you can gain access to the GMC Network by emailing email@example.com. Please note that you will need an NHS email address or show that you have a professional connection to the project (e.g. AHSN staff).
Please share this newsletter with colleagues
Please feel free to share this newsletter with any colleagues who may be interested and encourage them to subscribe to receive it directly to their own inboxes. Anyone interested in subscribing should email WMGMC Communications Officer, Lee Gibson, who will add them to the mailing list.