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13 September 2007
The people of Cardiff are today (September 13) offered a unique opportunity to take part in a multi-million pound visionary medical project that will help to cure and prevent many life-threatening and painful diseases.
UK Biobank is asking for their help to build the most detailed health research resource of its kind, to improve the health of future generations. Biobank Cymru, based at Cardiff University, is the all-Wales contribution to the UK Biobank project. It launches in Wales for the first time today and relies on people’s goodwill to succeed.
Chief Medical Officer for Wales, Dr Tony Jewell, and Ann Lloyd, Head of the Department for Health and Social Services and Chief Executive of NHS Wales, are two of the signatories to the letters of invitation being delivered today and over the course of the next six months.
Dr Jewell said: "This is a fantastic opportunity for people to do something positive for the health of the next generations. They will play a crucial role in our understanding of a wide range of serious and life-threatening illnesses and help health scientists develop measures on the prevention, diagnosis and treatment of such conditions."
In building this resource, UK Biobank asks for a small donation of blood and, with participants’ permission, it will track their health over the next 30 years and more.
As it matures, UK Biobank will become an unparalleled treasure chest of vital information on a range of diseases including cancer, heart disease, diabetes, stroke, dementia, depression, arthritis, osteoporosis and many other life-threatening and debilitating conditions.
In particular, it will provide insight into why some people get particular diseases and others do not - paving the way for prevention and better treatments.
Participation is by invitation only; most people aged 40-69 living within about a 10 mile radius of Cardiff will be asked if they wish to participate in the months ahead, before the project moves on to other cities and towns in Wales.
UK Biobank has the support of the Welsh Assembly Government. Through the Wales Office of Research and Development (WORD), the Welsh Assembly Government has provided funding for a mobile clinic that will enable people in rural and ‘hard to reach’ areas to participate in this project.
Researchers at Cardiff University have taken a lead in shaping the national project. The University also hosts UK Biobank’s national Participant Resource Centre - a free telephone information line staffed from 8am-7pm, six days a week.
Dr John Gallacher in the School of Medicine’s Department of Epidemiology, Statistics and Public Health is the UK Biobank academic lead in Wales.
He said: "This is a massive undertaking to improve the health of future generations. I do hope people will want to be a part of this historic project."
UK Biobank participants attend a 90-minute assessment at a special centre in Cardiff University’s MediCentre, Heath Park Campus, Cardiff, next to the University Hospital of Wales. The assessment centre opens on Monday, October 8.
Participants will provide information on their current health and lifestyles and will have a number of measurements taken, such as blood pressure, weight, lung function and bone density. They will be asked to donate small samples of blood and urine. Though not a health check, participants will leave with a list of personal health-related measurements and some indication of how they compare to standard values.
People who take part will also be asked to allow UK Biobank to follow them through routine health records over many years.
The UK Biobank resource will help untangle the complex interplay of nature (that is, genes) and nurture (such as lifestyle) in the development of many different diseases.
This ambitious project aims to recruit 500,000 people as it rolls out across Britain. Cardiff is the first assessment centre to open in Wales. It is the fourth in the UK, after Manchester, Oxford and Glasgow. Around 15 million blood and urine samples will eventually be stored for decades in specially designed laboratories near Manchester, at temperatures down to about -200°C.
Professor Rory Collins, UK Biobank’s Principal Investigator, said: "UK Biobank is a project of which the whole of Britain can truly be proud. We are talking to lots of British scientists about the ways this resource can help their research and, internationally, advising others who want to set up similar projects in their own countries.
"Health research has taken enormous strides in the past decade and we know a lot about how our bodies work, but we need to find out more. In setting up UK Biobank for researchers in the future - those who may only be in primary or junior school now or not even born - we are establishing the blood-based resource to do just that, and making a significant contribution to improving the health of future generations."
Taking part in UK Biobank is entirely voluntary and participants will be able to withdraw at any time should they wish to do so.
UK Biobank is funded by the Wellcome Trust, the Medical Research Council, the Department of Health, the Scottish Executive and the Northwest Regional Development Agency.
UK Biobank is hosted by the University of Manchester, has the support of the National Health Service (NHS) and is a collaborative effort between 22 UK universities. It has secured approval from a number of ethics and regulatory groups in relation to its research remit, recruitment process and the storage of blood and urine samples and access to participants’ medical records over many years. UK Biobank is supported by the Welsh Assembly Government.
Web link: www.ukbiobank.ac.uk
Ends MEDIC 19 UK Biobank
1. People who receive letters asking them to participate in UK Biobank will be offered a provisional appointment time and date. However, if the timing is inconvenient they can easily change this by calling free on 0800 0 276 276, Monday to Saturday, 8am-7pm. Participants will be able to confirm their appointment and find out more about the project by visiting UK Biobank’s web site:
2. A full list of measurements that will be provided at the end of the UK Biobank assessment visit, a location map for the assessment centre and other background information can be found on our web site: www.ukbiobank.ac.uk
3. UK Biobank is one of the biggest prospective epidemiological research studies ever undertaken and will certainly be the richest in terms of the information collected on participants. Following people’s health - rather than relying on them to remember what they did in the past - is a powerful way of learning about the causes of disease. Indeed, a similar British study launched by the eminent scientist Sir Richard Doll more than 50 years ago provided the crucial evidence that smoking was a major cause of lung cancer, heart disease and many other fatal and disabling conditions; findings that have saved many millions of lives worldwide.
4. UK Biobank is governed by an Ethics and Governance Framework and its activities are monitored by an independent Ethics and Governance Council to help look after the public interest. The Council is chaired by Graeme Laurie, Professor of Medical Jurisprudence at the University of Edinburgh. Website: www.egcukbiobank.org.uk Further information from Barry Taylor Barry.email@example.com 0117 928 8867
5. The idea of establishing a large national blood-based cohort was first proposed in 1999, with a provisional decision to support it made by the funders in 2002. So, there had been nearly seven years of consultation and meticulous planning for UK Biobank before an initial start-up phase in the Manchester area got underway in March 2006. This three-month ‘pilot’ to refine procedures led to the now-approved final protocol, which will be further enhanced as the project proceeds. Over the course of the 3-4 year recruitment period, there will be around 35 assessment centres in England, Scotland and Wales. The centres will be located in areas where there are about 150,000 men and women aged 40-69 living within about 10 miles’ radius (or the equivalent in travelling time for congested places like London). Each centre will be optimally located for public transport links, easy parking and access, including for disabled people. They will be staffed by trained nurses and other healthcare professionals. People in the target population will be mailed invitations to participate. No one will be pressured to take part and participants are free to withdraw at any time. All of these procedures have been carefully tested in the pilot phase, and found to be very acceptable by participants. The single baseline assessment visit takes about 90 minutes and involves a computer touch-screen questionnaire, a short interview, some standard measurements, and small samples of blood (equivalent to about 3 tablespoons) and urine. Information about participants’ subsequent health will be obtained, with their permission, from medical and other health-related records. Stringent security systems will be in place to protect participants' privacy. The project, which complies with the Data Protection Act and other relevant legislation, is subject to ongoing review by an independent Ethics & Governance Council and an International Scientific Advisory Board, as well as by the NHS North West Multi-centre Research Ethics Committee.
6. The recruitment phase for UK Biobank is jointly funded by the MRC and the Wellcome Trust at £28m each. The DH is providing an additional £5m and the Scottish Executive and the Northwest Regional Development Agency have added an additional £0.5m to the total. The Welsh Assembly has also agreed funding to build a bespoke mobile assessment centre for UK Biobank to help people not living near big towns to take part.
7. The Wales Office of Research and Development for Health and Social Care (WORD) is a branch of the Strategy Unit in the Welsh Assembly Government’s Department of Health and Social Services. The strategic aim of WORD is to support the generation of high quality evidence to underpin policy and practice in health and social care in Wales, for the benefit of patients and the public. To meet this aim, WORD develops, in consultation with partners, policy on research and development to reflect the health and social care priorities of the Welsh Assembly Government. WORD also commissions and directly funds research and development activity and contract manages projects and initiatives to ensure that the highest standards are met.
8. Cardiff University is recognised in independent government assessments as one of Britain’s leading teaching and research universities. Founded by Royal Charter in 1883, the University today combines impressive modern facilities and a dynamic approach to teaching and research. The University’s breadth of expertise in research and research-led teaching encompasses: the humanities; the natural, physical, health, life and social sciences; engineering and technology; preparation for a wide range of professions; and a longstanding commitment to lifelong learning. Cardiff is a member of the Russell Group of Britain’s leading research universities. Visit the University website at: www.cardiff.ac.uk
9. The Medical Research Council is dedicated to improving human health through excellent science. It invests on behalf of the UK taxpayer. Its work ranges from molecular level science to public health research, carried out in universities, hospitals and a network of its own units and institutes. The MRC liaises with the Health Departments, the National Health Service and industry to take account of the public’s needs. The results have led to some of the most significant discoveries in medical science and benefited the health and wealth of millions of people in the UK and around the world.
10. The Wellcome Trust is the largest charity in the UK and the second largest medical research charity in the world. It funds innovative biomedical research, in the UK and internationally, spending around £500 million each year to support the brightest scientists with the best ideas. The Wellcome Trust supports public debate about biomedical research and its impact on health and wellbeing. Website: www.wellcome.ac.uk
11. The Department of Health’s budget for health research for 2006-07 is £753m. Of this, £50m is allocated for capital funding; the rest is allocated to research through a portfolio of national research programmes. The funding supports clinical research in the NHS, research commissioned for policy development, and the NHS costs incurred in supporting research funded by other bodies such as the Research Councils and charities. Some funding is provided to increase capacity to undertake research, and to underpin the UK Clinical Research Collaboration and priority disease research networks.
12. The Scottish Executive is the devolved government for Scotland. It is responsible for most of the issues of day-to-day concern to the people of Scotland, including health, education, justice, rural affairs, and transport. It manages an annual budget of more than £27 billion in the financial year 2005-2006 which is due to rise to over £30 billion in 2007-2008.
13. The Northwest Regional Development Agency (NWDA) leads the economic development and regeneration of England's Northwest and is responsible for supporting business growth and encouraging investment; matching skills provision to employer needs; creating the conditions for economic growth; connecting the region through effective transport and communication infrastructure; promoting the region’s outstanding quality of life.
More information from UK Biobank:
Andrew Trehearne01865 743960 (work)0789 404 2600 (mobile)01865 767251 (home)Email: Andrew.firstname.lastname@example.org
Emma DarlingPublic RelationsCardiff UniversityTel: 029 2087 4499Email: DarlingEL@Cardiff.ac.uk
Welsh Assembly GovernmentRory Powell029 2089 8012
Please note: Filming and photo opportunities will be arranged for the media when the Cardiff assessment centre opens (Monday October 8, 11am). It will be possible to interview participants and to tour the assessment centre facilities on this date.
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