The latest issue of the Northern Ireland Cancer Research Consumer Forum's newsletter is now available, Consumer Impact Issue 7.
Consumer Impact Public Information Evening Special Edition 2012 is now available. This special edition of the Northern Ireland Cancer Research Consumer Forum newsletter gives details of the Public Information Evening held on 6 September 2012.
Our Early Phase Cancer Clinical Trials team have prepared a booklet for people who want to know more about taking part in a PhaseI trial. Phase I Cancer Trials Booklet 2012
(back row, left to right) Prof Richard Kennedy, Prof Joe O'Sullivan, Mr Geoff Hill (centre, left to right) Mr Paul Burns, Dr Richard Wilson, Mr Dave Ardron, Mr Stuart McIntosh) (front row, left to right) Mrs Eileen Dillon, Mrs Judith Ardron, Mrs Margaret Grayson)
Members of the public and staff described how inspired they were after talks given at a recent public information evening about cancer research. The event held on 6 September 2012 in Belfast City Hospital, was hosted by the Northern Ireland Cancer Research Consumer Forum (NICRCF), and chaired by Mrs Margaret Grayson (NICRCF Chair) and Mr Geoff Hill (NICRCF). The evening showcased local cancer research and the partnerships between professionals and patients and the contribution of Personal and Public Involvement (PPI) in research. Speakers talked passionately about their research as they illustrated how this is bringing advances in cancer treatment and benefits in quality of life for patients in NI.
Dr Richard Wilson, Director, NI Cancer Trials Centre & Network (NICTC&N) outlined the structures and activities of the NI Cancer Trials Network facilitating over 1000 patients per year taking part in cancer research studies across NI. Mrs Eileen Dillon, NICTC&N Lead Nurse and Network Manager, described how Clinical Research Nurses provide patient focused care to clinical trial participants.
Mr Stuart McIntosh, Consultant Breast Surgeon, Belfast City Hospital, illustrated how innovations in breast cancer surgery have led to major improvements in cosmetic outcomes and quality of life for women. He described his current research involving imaging technology to enhance breast reconstruction and clinical trials of new therapies in the pre- and peri-operative settings.
Professor Richard Kennedy, Centre for Cancer Research and Cell Biology (CCRCB) and Consultant Medical Oncologist, NI Cancer Centre, described the research pathway from the lab to the clinic and the multiple collaborations involved. He explained how this work is leading to the discovery of new treatments and new ways to select the correct treatment for an individual patient (personalized medicine).
Professor Joe O’Sullivan, CCRCB and Consultant Clinical Oncologist, NI Cancer Centre, described how clinical trials are promoting high quality cancer treatments. He illustrated how his research in Belfast includes new life-extending treatments for patients with ‘incurable’ prostate cancer, offering patients hope and access to new drugs and techniques.
Mr Paul Burns described his personal experience of participating in a cancer clinical trial. He spoke of his diagnosis, treatment journey and his optimism. The audience was moved by his honest account of the impact of cancer in his life and what really matters to him.
Mr Dave Ardron, Consumer Liaison Group, and Sheffield Research Panel, illustrated how the involvement of patients and carers in cancer research across the UK is adding a vital voice at local and national levels, helping to shape research to increase benefit to patients. Mrs Margaret Grayson concluded the talks explaining how those affected by cancer can get involved in the NICRCF to help shape cancer research.
For more information about cancer research or the NICRCF please contact Ruth Boyd at the Northern Ireland Cancer Trials Centre firstname.lastname@example.org
Want to know more about the exciting developments in cancer research in Northern Ireland?
The Northern Ireland Cancer Research Consumer Forum, working with the Northern Ireland Cancer Trials Centre based at the Belfast City Hospital, is hosting a Public Information Evening to showcase some of the exciting developments in cancer research in Northern Ireland, which continue to drive forward advances in treatment and care to benefit patients.
The talks will cover a range of topics:
- developments in cancer surgery, radiotherapy and chemotherapy
- innovations in personalised medicine and collaborations with the Centre for Cancer Research and Cell Biology, Queen's University Belfast
- the increasing activity of the Northern Ireland Cancer Trials Network
- the important role of personal and public involvement (PPI) in influencing cancer research
Leading researchers and national and local leaders in cancer research PPI will provide unique insights into the exciting developments in cancer research happening here on our doorstep in Northern Ireland!
Please click here for Flyer 'Cancer Research in Northern Ireland - a brighter future together'
Please click here for Programme - 'Cancer Research in Northern Ireland - a brighter future together'
The Northern Ireland Cancer Research Consumer Forum and the Northern Ireland Cancer Trials Centre are excited to announce this important event in their calendar - 'Personal and Public Involvement (PPI) in Research - a masterclass'.
We are delighted to welcome Dave Ardron to Belfast and look forward to this unique opportunity to learn more about effective consumer involvement in research.
Please click here for Flyer - 'Personal and Public Involvement (PPI) in Research - a masterclass'
Please click here for registration form
(left to right) Dr Stephen Dobbs (UKCTOCS Lead Consultant), Adrina O’ Donnell (UKCTOCS Co-ordinator), Margaret Murray (Clinical Research Nurse)
(left to right) Margaret Murray (Clinical Research Nurse), Adrina O’ Donnell (UKCTOCS Co-ordinator), Stevie Marley (Administrative Assistant)
The United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS) is a national multi-centre clinical trial which became operational at Belfast City Hospital (BCH) in 2002 and completed at the end of March 2012. Over this period 13,600 women from Northern Ireland have participated in the study. Dr Stephen Dobbs, the Principal Investigator at BCH, wanted to thank all the women from Northern Ireland who had taken part, adding “UKCTOCS has been a major project for all involved, both for the Belfast HSC Trust and the many volunteers who participated. It has been a very successful clinical trial, having recruited vast numbers of women. Most importantly for the volunteers involved in the study, ovarian cancers and other incidental cancers have been detected through the screening practices.”
Although the final results for the study are not yet available, Adrina O’ Donnell, Clinical Research Nurse at the NICTC and the UKCTOCS Co-ordinator commented “UKCTOCS has been a highly rewarding study and the team feel privileged to have been involved in its 10 year journey. It has to be acknowledged the overall success of the programme would not have been possible without the invaluable contribution of all the staff and volunteers involved.”
Belfast was one of 13 centres across the UK that took part in UKCTOCS. The study, co-ordinated by the Gynae/Oncology Research Department at University College London, has been one of the largest randomised controlled trials ever undertaken, involving 200,000 women UK-wide.
What is the aim of UKCTOCS?
The aim of UKCTOCS is to establish whether ovarian cancer screening can save lives, thus reducing mortality from the disease and therefore justifying a nationwide screening programme.
The study is also looking at the psychological impact of screening. Ladies were randomly invited (by post) to attend on a ‘voluntary’ basis. At various points in the recruitment phase, press releases highlighted the study and thus encouraged women to avail of the opportunity to be involved.
The research programme completed across the UK on 31 March 2012. Analysis of the study data however will be ongoing and the final results are expected for publication in 2015.
Websites for more information about ovarian cancer
The Post Consultation V1 A Strategy for PPI in Cancer Research in Northern Ireland is now available.
Please continue to send comments and enquiries to:Miss Ruth BoydCancer Research Senior NurseNorthern Ireland Cancer Trials CentreEast PodiumC-FloorBelfast City HospitalLisburn RoadBelfastBT9 7ABTel: 028 90 263903Email Ruth Boyd at email@example.com
A Strategy for Personal and Public Invovlement (PPI) in Cancer Research in Northern Ireland is now out for consultation until 14 October 2011.
Please forward enquiries or comments to:Miss Ruth BoydCancer Research UK Senior NurseNorthern Ireland Cancer Trials CentreEast PodiumC-Floor
Belfast City HospitalLisburn RoadBelfastBT9 7ABTel: 028 90 263903E-mail Ruth Boyd at: firstname.lastname@example.org
The Northern Ireland Cancer Trials Centre (NICTC), formerly known as the Northern Ireland Cancer Clinical Trials Unit, launches its new name, logo and web-site today.
The co-ordinating centre for cancer clinical trials in Northern Ireland, NICTC based at Belfast City Hospital, is a joint project between Queen’s University Belfast and the Belfast Health and Social Care Trust. The work of the Centre is funded by the Health and Social Care R&D Division of the NI Public Health Agency and by the charities Cancer Research UK and the Friends of the Cancer Centre.
Professor Bernie Hannigan, Director of HSC R&D, welcomed the launch saying “Cancer clinical trials are essential for continued progress towards even more effective treatments and care for patients with cancer. We are very pleased to continue supporting this important activity and we applaud the very significant achievements being made by clinicians and researchers based in Northern Ireland”.
Dr Richard Wilson, the Centre’s Clinical Director said "Our patients with cancer who take part in clinical trials are helping us to develop better and safer treatments. They also help us through translational research to identify who is most likely to benefit from a given therapy, and who is most at risk of side-effects.
"This allows us to develop personalized medicine specifically targeted to each individual and their cancer. 'Last year over 1,100 patients in Northern Ireland took part in our clinical trials or other high quality cancer research studies".
One such patient is Allan Ardies from Bangor, who was diagnosed with malignant melanoma in 2008.
He noticed that a mole on his wrist which, in his own words had been there ‘forever’, had changed in shape and colour.
"A large black bubble, just like a full stop, had formed on the top", said Allan and aware of the significance of these changes, he promptly had it checked out and removed in December of that year.
Whilst on holiday in July 2009 Allan found a lump under his left armpit, which was very painful. Further investigation revealed that the cancer had spread and in October he had surgery to remove the lump.
"All was successful and I was ready to be discharged from hospital," said Allan, "when I was told x-rays taken prior to the anaesthetic revealed something in my lung."
A subsequent PET scan showed other areas of concern – lesions in skin, scalp, eyelids and lip.
'I had never been ill before,' adds Allan, 'in fact I never visited my Doctor.'
He began chemotherapy in November 2009, following the removal of lymph nodes under his arm.
"I tried to keep my life as normal as possible,' continued Allan. "I would have bloods taken on a Monday, then straight into work, chemo on Tuesday and back to work on Wednesday.
"Strangely I didn’t lose my hair – just my eyebrows!
"There was good news and bad news. Most of the spots on my skin had cleared but my lungs were not clear, so in March 2010 I was given a weekly drug to treat everything."
Twenty four cycles of chemotherapy followed and a second scan showed Allan’s lungs were not completely clear and more lesions had appeared on his skin. His body appeared to have become resistant to the drug.
Allan’s oncologist suggested he was referred for a clinical trial and when tests showed he was suitable, he began a trial with a combination of chemotherapy and a molecular targeted drug. This two pronged attack has been very helpful so far and scans show all skin lesions have gone, but there were some remaining in his lung.
He has now finished his trial therapy and a close check is being kept on Allan every eight weeks. His energy is returning and remains positive.
"I was told I had a one in ten chance of this working," he added "I know the cancer has not gone away, but it is under control.
"I am fortunate to have been able to take part in a trial, as it gave me the opportunity to not only help myself, but others who may come behind me.
"I feel I have accomplished something and the nonsense and trivia in life soon pales into insignificance when faced with a cancer diagnosis."
Cancer Research UK Lead research Nurse Anne Croudass said she was delighted to be in Northern Ireland to represent the charity.
"We fund the highest quality research into the treatment causes and prevention of cancer. It is through supporting Scientists, Doctors and Nurses, such as those here in Northern Ireland, that we continue to improve outcomes for cancer patients."
The NICTC is also launching a strategy to increase personal and public involvement in cancer research in Northern Ireland.
Anyone living with or beyond cancer, or relatives or carers of someone with cancer may want to consider getting involved in helping to influence cancer research.
If you are in one of these groups and interested in finding out more, you are invited to get in touch with NICTC. You can find details at the web-site, or by contacting Ruth Boyd, Cancer Research UK Senior Nurse at the NICTC Tel: 028 9026 3903 or e-mail email@example.com.
Information about our current clinical trials in Northern Ireland is available on the web-site at www.qub.ac.uk/nictc.
Updated 5 April 2011