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Cymraeg

Share inherited cancer fears with digital stories

24 September 2009

People who have experienced the fear of inheriting cancer are being offered the chance to record their feelings and experiences for the benefit of others in a new digital story project organised by Cardiff University's Institute of Medical Genetics.

Researchers from Cardiff University's School of Medicine with funding from Tenovus, the cancer charity, have teamed up with The Cancer Genetics Service for Wales (CGSW) to encourage former patients to volunteer and tell their stories.

The Cancer Genetics Services for Wales is an all-Wales NHS service open to anyone who has had a number of family members with cancer and are worried they may be at increased risk of inheriting cancer.

Dr Rachel Iredale from Cardiff University's Institute of Medical Genetics said: "People worried about the risks of inheriting cancer often feel isolated. Being able to access other peoples stories can be the first step in helping someone deal with the emotional fear of inheriting cancer."

The StoryBank 2010 project aims to recruit volunteers of all ages, with all types of experiences of cancer, and from all parts of Wales to share their experience of living with the risk of inherited cancer.

Their stories will be filmed and placed on a dedicated website, so others - regardless of where they are in Wales - can access and benefit from these experiences.

Cancer is a common condition but inherited cancers are rare. Only between 5 and 10% of all cancers are inherited. This means that in a group of 100 people with cancer only about five to ten of them will have inherited a known gene that increases their likelihood of developing cancer.If someone has a family history of cancer, tests are often undertaken to see if one of these genes is present in their family.

Dr Rachel Iredale is urging former patients of The Cancer Genetics Services for Wales to come forward and record their stories for the benefit of others. Dr Iredale added: "Telling your story is not for everyone, but for those patients who would like to tell of their own experience of living with the risk of cancer are urged to get in touch."

Patients who would like to volunteer and tell their stories can contact Cardiff University's Cancer Genetics Research team on 029 20 746731.

Cardiff School of Medicine

Cardiff University’s School of Medicine is a significant contributor to healthcare in Wales, a major provider of professional staff for the National Health Service and an international centre of excellence for research delivering substantial health benefits locally and internationally. The School’s 800 staff include 500 research and academic staff who teach more than 2,000 students, including 1,110 postgraduate students.

The School is based at the Heath Park Campus, a site it shares the University Hospital of Wales, the third largest university hospital in the UK. The School has an all-Wales role, contributing greatly to promoting, enhancing and protecting the nation’s health. A key partner in this role is the National Health Service (NHS) in Wales, with which the School is linked at all levels. This mutual dependency is illustrated by the teaching of medical undergraduates in more than 150 hospitals located in all of Wales’ health authorities. The medical curriculum followed at the

School enables students to acquire and apply knowledge, skills, judgement and attitudes appropriate to delivering a high standard of professional care. Around 300 new doctors currently graduate from the School every year and the Welsh Assembly Government has invested substantially in new teaching facilities to increase this number further.

The School is an international leader in basic and clinically applied research activities and scored highly in the most recent Government Research Assessment Exercise. School of Medicine researchers annually win tens of millions of pounds in research awards to work with Government, the healthcare industries and the charitable sector on the most pressing issues of human health. The School has six interdisciplinary research groups to draw upon its own strength in depth and the vast range of expertise available across Cardiff University. These groups are addressing cancer; health sciences research; cardiovascular sciences; genomic approaches to health and disease; infection, immunity and inflammation; metabolism repair and regeneration. The School continually invests in facilities, with major developments including the Henry Wellcome Building for Biomedical Research in Wales, the largest enterprise of its kind ever in Wales. This £11M centre contains research laboratories and facilities for patients to participate in investigations of new disease treatments.

The School has been instrumental in establishing and running many important national research initiatives including the Wales Gene Park, Wales Cancer Bank, the Cardiff Institute for Tissue Engineering and Repair and the Healing Foundation UK Centre for Burns Research. The Wales Gene Park is involved in biomedical research, the provision to the NHS of novel diagnostic and clinical services, knowledge dissemination, genetics and genetics education, and the successful commercialisation of innovations arising from such activities. The Wales Cancer Bank is a collaborative project involving several Welsh NHS Trusts, the universities of Bangor and Swansea and the Welsh Assembly Government and is the first population-based collection of tumour and control tissue samples in Wales. The research will help establish the causes of cancer, help identify new areas for treatment and find out the best way to care for individual patients.

The Cardiff Institute for Tissue Engineering and Repair uses scientific research to solve problems which are placing a heavy burden on health services around the world, such as, eye repair, chronic wounds, kidney repair and sports injuries. The Healing Foundation UK Centre for Burns Research is a multi-million pound collaboration investigating treatments and support fort the physical and mental rehabilitation of the 14,000 people suffering severe burns in the country every year.

Tenovus

Tenovus is a charitable organisation committed to the control of cancer through: quality research, prevention/education, counselling and patient care. All our activities are designed to ensure the fulfilment of this mission in accordance with best practice. As well as our research programmes, Tenovus is committed to funding support and counselling services for cancer patients and their families through their Cancer Support Team of counsellors, welfare rights advisors and social workers and through the Tenovus Freephone Cancer Support Line.

Further information is available at: www.tenovus.com

Cardiff University

Cardiff University is recognised in independent government assessments as one of Britain’s leading teaching and research universities and is a member of the Russell Group of the UK’s most research intensive universities. Among its academic staff are two Nobel Laureates, including the winner of the 2007 Nobel Prize for Medicine, Professor Sir Martin Evans.

Founded by Royal Charter in 1883, today the University 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.

Visit the University website at: www.cardiff.ac.uk

Dr Rachel Iredale

Institute of Medical Genetics

Cardiff University

Tel: 029 20 746731

E-mail: Rachel.Iredale@cardiffandvale.wales.nhs.uk

Dr Debbie Marsden

Institute of Medical Genetics

Cardiff University

Tel: 029 20 748920

E-mail: marsdend@cardiff.ac.uk