Speakers front Avril Law, Hazel Carson, Dr Lisa Jeffers. Middle Mr Stuart McIntosh, Prof Richard Kennedy. Back Dr Gerry Hanna, Dr Stephen Dobbs with Forum members
Staff from the NI Cancer Trials Network provide information
The NI Cancer Research Consumer Forum (NICRCF) hosted a very successful Public Information Evening on 13 April 2016. The event, designed to showcase what’s new in breast and ovarian cancer research in NI, was held in the Centre for Cancer Research and Cell Biology, Queen’s University Belfast (QUB). From the very busy agenda and the fascinating presentations, it was clear that both these cancers are a focus of significant development in clinical research at present. Clinician, nurse and patient perspectives provided an important range of information covering advances in our understanding of cancer and its treatment, as well as some of the services, support and personal experiences involved. Information stands during the refreshment break, from the NICRCF, NI Cancer Trials Network, Macmillan Information and Support Centre, Cancer Research UK, Friends of the Cancer Centre, BRCA Link NI, Cancer Lifeline and Target Ovarian Cancer, also added to the breadth of information resources available to the public.
Margaret Grayson, chairperson of the NICRCF, ably guided the packed seminar room of around 90 attendees through the evening’s programme. The evening started with a brief introduction from Margaret on the work of the NICRCF, which partners with cancer researchers to enhance the quality of research for patient benefit.
Dr Gerry Hanna, Consultant Oncologist, launched the research updates with an overview of radiotherapy clinical trials in breast cancer. He highlighted that the results of national clinical trials that Belfast had been part of in the past, were now informing best practice in the field. The future included the use of molecular and genetic information to inform individual patient treatment strategies. A study to evaluate stereotatic body radiotherapy (SABR) in the treatment of metastases was also planned.
Mr Stuart McIntosh, Consultant Surgeon, continued the breast cancer research theme providing the perspective of the breast surgeon in an era of ‘personalised surgery’. In certain circumstances, new discoveries were challenging the conventional pathway of surgery as the primary treatment of breast cancer. Up-front treatment with chemotherapy, endocrine and targeted therapies were demonstrating patient and research benefits. Mr McIntosh’s presentation underlined the growing portfolio of local consultant/investigator led research here, and vital local research collaboration. He focussed on two studies; the ‘Neo-DDRD Study,’ currently recruiting patients, and the Chemo Prevention in BRCA Carriers (CIBRAC) study, currently being set up.
Dr Stephen Dobbs, Consultant Oncological Gynaecologist, shifted audience attention to the field of ovarian cancer. He outlined the surgical strategies and the portfolio of current research. Early detection is a key objective in this disease. Dr Dobbs described the latest findings from the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS), the largest ever study of its type. 15,000 women in NI had taken part. The impact of screening on mortality from the disease was inconclusive at present, but further results would be analysed after longer patient follow-up. The Rockets (Refining Ovarian Cancer Test Accuracy Scores) study was currently open for recruitment at the Belfast City Hospital. Women referred with symptoms of suspected ovarian cancer are being invited to take part. The study aims to improve early detection of ovarian cancer through the development of new tests/risk prediction models.
Dr Lisa Jeffers, Genetic Nurse Counsellor, highlighted that while breast cancer affected 1 in 11 women in NI during their lifetime, only 5-10% of these cancers were due to an inherited predisposition. The BRCA1 and BRCA2 genes were most commonly associated with familial breast cancer. Dr Jeffers described the National Institute for Health and Care Excellence (NICE) guidance on familial breast cancer and genetic testing, and she explained what this means for families. A number of studies are currently being undertaken by the NI Regional Genetics Service, including BOCS: Breast Cancer and Ovarian Cancer Susceptibility study.
Concluding the presentations in the first half of the evening, Hazel Carson gave a very personal insight into the impact of inheritance of an abnormal BRCA gene. She described her family history, the tests, the decisions and the journey her family has been on. These experiences prompted her to set up the peer support group BRCA Link NI, which also links with medical advisors. Hazel conveyed both realism and enthusiasm, and this really made an impact on the audience.
After the break, returning to the ovarian cancer theme, Dr Laura Feeney, Medical Oncology Registrar, presented her doctoral research proposal, looking at the development of a ‘an early warning diagnostic and treatment response markers of non-uterine pelvic, high-grade serous carcinomas’. Collection of tumour samples would help research to identify and validate a test to help earlier identification of cancers.
Professor Richard Kennedy, Consultant Oncologist, started his presentation with a helpful look at the role of genes in cancer. Using the analogy of our genes and a recipe book, he described how sometimes the recipes/genes get changed over time, by, for example lifestyle factors, and these changes lead to faulty ‘recipes’ and cancer can occur. This brought the presentation to an over-arching theme of the evening – personalised treatment. Increasing understanding about the genetic changes in cancer were helping the development of targeted therapies, and strategies to individualise care, not just to a specific cancer types, but to the precise genetic profile of a patient. The objective of personalised medicine was explained simply as the providing the ‘right patient, with the right treatment, at the right time’. Professor Kennedy went on to describe a current clinical trial involving a drug (AML201) discovered in QUB and developed for clinical use by Almac, which targets blood vessel growth associated with many ovarian tumours.
Avril Law concluded the talks for the evening sharing her experience of ovarian cancer and participation in the ICON 8 clinical trial at the NI Cancer Centre. This randomised study compares weekly with 3-weekly chemotherapy. She gave insight into her personal decision to take part, and the perspectives of family members. Randomised to the standard treatment, she explained the impact of chemotherapy. Her honest description of the diagnosis and treatment experience resonated with others in the room, as did her heartfelt belief that taking part in clinical trials will help others in the future.
Rounding up the evening there was a Question and Answer session. Questions from the audience seemed to echo wider interest in the room, covering topics such as duration of hormonal therapy in breast cancer, drug treatment for patients with BRCA gene abnormality and cancer drug funding.
The evening was evaluated very positively and the NICRCF wish to thank speakers, staff and the public for their contribution to a very successful event.
Please see below for presentations from the evening
Breast Cancer Research and a Changing Treatment Pathwayy - Mr Stuart McIntosh
A Guide to Inherited Breast and Ovarian Cancer - research and services - Dr Lisa Jeffers
New Research into Early Detection Biomarkers in Ovarian Cancer- Dr Laura Feeney
Breast & Ovarian Cancer Research - NI impact in innovation for patient benefit - Prof Richard Kennedy
Further information about current cancer clinical trials is available here.
For further information about the NICRCF please see their annual report.
The Northern Ireland Cancer Research Consumer Forum welcomes you to a free Public Information Evening to hear about what's new in Breast & Ovarian Cancer Research and its impact on cancer treatment and care.
The event will be held on Wednesday, 13 April 2016, from 7.00 pm to 9.00 pm in the Centre for Cancer Research and Cell Biology at Queen's University Belfast on the Belfast City Hospital site.
There will also be information stands during a refreshment break and an opportunity for questions to experts in the field.
If you want to find out more, or wish to register your interest, please contact Ruth Boyd at the Northern Ireland Cancer Trials Network at Belfast City Hospital, tel 028 9063 8468 or email email@example.com.
Look forward to see you!
The Northern Ireland Cancer Research Consumer Forum is delighted to announce the publication of the NICRCF Year 4 Annual Report.
Scientific and medical personnel from the pharmaceutical industry, academia and health gathered in Belfast on Wednesday 7 and 8 October for the 2015 Northern Ireland Clinical Innovation Conference, an event focused on improving collaborative efforts to accelerate adoption of innovation in the healthcare system. The event showcased Northern Ireland’s clinical and academic biomedical research capability, infrastructure and world class research outcomes, with the goal of increasing the number and scale of international medical research partnerships in Northern Ireland.
The 2015 event was jointly organised by the Association of the British Pharmaceutical Industry Northern Ireland Innovation Group, Health and Social Care (HSC) Innovations, the HSC Research & Development Division of the Public Health Agency, Invest NI, Queen’s University Belfast and Ulster University. The inaugural event in 2014 resulted 8 new clinical studies being placed in Northern Ireland, with a further 18 research collaborations still in discussion. These collaborations have the potential to boost Northern Ireland’s role as a global destination for clinical research and to contribute towards improved health for the population, as well as providing benefits to the local economy.
This year’s conference attracted 200 delegates from 21 global pharmaceutical companies, academia, local life science businesses, health and social care, patient groups and government. The agenda was designed to allow engagement, discussion and debate in a variety of workshops covering cardiology, cancer, respiratory, precision medicine and medicines optimisation, as well as accelerating adoption and diffusion of innovation.
Speaking at the event Dr Michael McBride, Chief Medical Officer, Department of Health, Social Services and Public Safety, said: "I am delighted to have been able to support and attend the Northern Ireland Clinical Innovation Conference. Involvement in clinical research is vital to gathering the evidence needed to understand which tests, treatments and care practices are best for our patients.
This event represents an opportunity to engage with companies that are actively seeking to run research studies in Northern Ireland, to understand their requirements and to bring more commercially-funded research to Northern Ireland. This gives our patients access to the newest tests, treatments and technologies through regulated clinical trials programmes. Ultimately, clinical trials provide the evidence base to ensure services are optimally designed and resources are used in an evidence-based manner for the benefit of our population."
Colette Goldrick, Director ABPI NI, who attended the event said: ‘Our industry seeks to develop research collaborations in countries with strong international networks, outstanding academic and clinical leadership and the ability to deliver globally applicable results quickly. Northern Ireland ticks all those boxes. Our job was to get international research leads here to see at first-hand what can be delivered, and it was exceptionally gratifying to see so many new and potentially exciting connections being made over the two days of the conference.’
Notes to editors:
1. The conference was organised by a steering group comprising ABPI NI Innovation Group, Health and Social Care (HSC) Innovations, the HSC Research &Development Division of the Public Health Agency, Invest NI, Queens University Belfast and Ulster University.
2. It was organised as an opportunity for medical and scientific staff from global pharmaceutical companies to engage with government, Health and Social Care, academic and clinical research stakeholders in Northern Ireland.
3. The Northern Ireland Executive is working on a Life and Health Sciences Strategy. This strategy will be cross-departmental with input from the Department of Enterprise, Trade and Investment (DETI) and Department of Health, Social Services and Public Safety (DHSSPS).
4. At this point, the Life and Health Sciences Strategy is in development, informed by the Matrix Life and Health Sciences Capability Assessment and Foresight Report which was launched in February 2015 by Department of Enterprise, Trade and Investment Minister Arlene Foster and Permanent Secretary Richard Pengelly, supported by UK Life Sciences Minister George Freeman.
The latest issue of the Northern Ireland Cancer Research Consumer Forum's newsletter is now available, Consumer Impact Issue 11.
Mike Moran, Ruth Boyd, Margaret Grayson
The NI Cancer Research Consumer Forum (NICRCF) and NI Cancer Trials Network (NICTN) congratulate NICRCF member, Kate Burns, on winning 2nd prize in an essay competition about the value of Clinical Trials. Kate’s article not only exemplifies the importance of clinical trials, but is a touching testament to an inspiring family. The competition was organised by the Health Research Board-Trials Methodology Research Network in association with the Irish Times and her winning entry is available here.
The competition marks International Clinical Trials Day on 20th May http://www.research.hscni.net/international-clinical-trials-day-20-may, which celebrates the day, back in 1747, when James Lind started a study of dietary supplements for sailors. His study, which discovered oranges and lemons prevented scurvy, is acknowledged as the origin of clinical trials involving both experimental and control groups, a research design that helps to establish the health benefit of new treatments.
On 20th May 2015, NICRCF members and NICTN staff will be raising awareness of clinical trials in the NI Cancer Centre and around the Network. The ‘OK to Ask’ campaign has been re-launched by HSC R&D. Everyone is encouraged to ask about clinical research!
Congratulations to Adrina O'Donnell, Clinical Research Nurse in the Northern Ireland Cancer Trials Centre, who won the prize for best Nursing Research Poster at the recent All Ireland Cancer Consortium Conference at Riddel Hall. The poster was entitled UKCTOCS - is screening/surveillance for ovarian cancer an option?. The UKCTOCS (United Kingdom Collaborative Trial of Ovarian Cancer Screening) study is one of the largest studies to be undertaken, involving 200,000 women UK-wide.
The Northern Ireland Cancer Research Consumer Forum is delighted to announce the publication of the NICRCF Year 3 Annual Report.
Prof Richard Wilson
The staff of NI Cancer Trials Centre (NICTC) and other Trust and University colleagues, along with members of the NI Cancer Research Consumer Forum, congratulated Professor Richard Wilson, Consultant Oncologist, on his recent appointment to Chair of Cancer Medicine, at Queen’s University Belfast. Professor Wilson has been the Clinical Director of the NICTC since 2003, and Director of the NI Cancer Trials Network since its inception in 2008. He has played a significant role in the development of translational and early phase research in Belfast and is Deputy Lead of the NI Experimental Cancer Medicine Centre. A specialist in colorectal cancer, he has an international and national leadership role, including Chair of the ASCO Colorectal Cancer Programme Track Committee, Chair of the International Rare Cancers Initiative Small Bowel Adenocarcinoma Working Group and Chair of the National Cancer Research Institute Clinical Studies Group for Colorectal Cancer.
Professor Joe O’Sullivan, Clinical Director, NI Cancer Centre, congratulated Richard commenting ‘I am delighted for Richard. This is a very well deserved promotion which recognises among many other achievements, the enormous contribution he has made to clinical cancer research in Northern Ireland.’
Richard thanked staff for their support and said ‘I believe this promotion is based on collaborative working over many years with colleagues in BHSCT, QUB and other organisations. This appointment will allow me to influence both cancer services and research toward better outcomes for current and future patients.’
Forum members and speakers
Mr Ronan Gray, Professor Richard Wilson and Mr Norman Surplus
Public Hear about Progress in Bowel Cancer Research and Care
The Northern Ireland Cancer Centre was the venue for an informative evening celebrating what’s new in bowel cancer research and care on 2 Dec 2014. The event, hosted by the NI Cancer Research Consumer Forum (NICRCF), brought together a range of experts in bowel cancer treatment, research and care, who provided stimulating presentations and information stands, taking the audience on a journey from prevention and screening through treatment, follow-up and beyond!
Starting off the programme for the evening, Margaret Grayson, who chaired the event, welcomed the audience to the packed seminar room, and explained the work and aims of the NI Cancer Research Consumer Forum, a group of patients and carers working in partnership with researchers and enthusiastically raising awareness about cancer research, for the benefit of patients.
Mr Terry Irwin, Consultant Surgeon at Belfast Trust, provided a comprehensive background to bowel cancer, including insights into the process of diagnosis and surgical treatment. He also stressed the significant benefits of early diagnosis and the cancer survival benefits resulting from the bowel cancer screening programme in NI.
Professor Richard Wilson, Consultant Oncologist and Director of the NI Cancer Trials Centre (NICTC) and Network followed with a focus on advanced bowel cancer. This was an area where new drug treatments and surgical interventions were leading to improvements in survival outcomes. He explained how personalised medicine was helping doctors match the most effective to specific types of bowel cancer, on an individual basis. Professor Wilson outlined how research had been instrumental in bringing about advances in bowel cancer treatment, and he described the role of the NI Cancer Trials Network, facilitating patient access to clinical trials across Northern Ireland.
The audience were willing participants in a fun introduction to the impact of our genes with a ‘taste test’. Margaret Carr, Cancer Research UK Research Engagement Manager, invited the audience to try taste-test strips on their tongue, as she explained 25% of the population were ‘super-tasters’ - having a significant bitter sensitivity linked to the TAS2R38 gene (not related to cancer!). Mints were on hand to quickly alleviate the bitter flavour experienced by the super-tasters in the room!
The clinical trial showcased at the event was the MErCuRIC* Study. The scientific foundation of this study in bowel cancer had been developed by Dr Sandra Van Schaeybroeck, Cancer Research UK Clinician Scientist, at the Centre for Cancer Research and Cell Biology, Queen’s University Belfast (QUB). Now this work had progressed into an international collaboration and had been awarded a European grant to proceed with international early phase clinical trials in advanced cancer. Dr Van Schaeybroeck explained how this study was looking at a combination of two new drugs to target types of bowel cancer that had previously been difficult to treat.
Professor Mark Lawler, Chair in Translational Cancer Genomics, QUB, concluded the research section of the evening by summarising the significant leadership in bowel research being driven by researchers here in Belfast. Innovations in science, clinical trials, biotechnology and precision medicine were being ‘born in Belfast and led in Belfast’. NI was also at the forefront of the European Cancer Patient’s Bill of Rights, a charter to challenge the current inequalities experienced by cancer patients in Europe.
Bernie McGarry, from Bowel Cancer UK, concluded the first half of the event with a brief overview of the work of the charity in raising awareness of bowel cancer, lobbying for the best treatments, and providing patients with information and support.
During a break for refreshments, kindly provided by the staff and volunteers of the Macmillan Information and Support Centre (MISC), the public were invited to find out further information from stands and posters provided by MISC, NICRCF, Cancer Research UK, Bowel Cancer UK and Colostomy and Ileostomy Associations, and the Cancer Registry.
After the break, Jane Rankin, Lead Cancer Physiotherapist in Belfast Trust, reported on a successful ‘Community Cancer Rehabilitation Programme.’ Patients with bowel or gynaecological cancers had attended the pilot scheme in Belfast. Through individual assessment, the programme aimed to promote healthy lifestyles, education about the condition and how to self-manage, addressing physical, psychological and social consequences of disease. A further rehabilitation programme was going to start in January and Jane encouraged anyone interested to contact the Macmillan Information and Support Centre (Tel: 028 90 638980).
Edel Aughey, Macmillan Project Manager for Transforming Cancer Follow-Up, provided a comprehensive overview of the project’s aims to improve the experience of cancer survivors through meeting unmet need, promoting health and well-being through individualised care planning, and enhancing service effectiveness, coordination and integration. During the project, to date, this new approach had been introduced in breast and prostate cancer. The number of people living with a cancer diagnosis in NI is currently 67,000, and this is due to rise. Mrs Aughey invited the audience to check out the NI Cancer Network survivorship website, for a calendar of events and services available www.survivorship.cancerni.net.
For many of the audience, the most inspiring presentation of the evening was Norman Surplus. Diagnosed with bowel cancer at just 40 years of age in 2003, Norman recounted his diagnosis and treatment, and how he coped with these new experiences, or this ‘adventure.’ He explained how the cancer experience had been part of his motivation to train as a Gyroplane Pilot in 2007, and in 2010 he launched a world record breaking Autogyro flight around the globe, which he aims to complete next year, raising money for Bowel Cancer UK. The audience had the opportunity to view some of the fascinating and often remote destinations Norman had travelled to, but as he explained, he had been welcomed everywhere he travelled, and cancer was a shared concern that united humanity across the globe.
The evening rounded-up with some questions to the speakers, and feedback about the event was very positive. Anyone who wishes to find out more about clinical trials in NI or the NICRCF can go to the NICTC website www.qub.ac.uk/nictc or e-mail firstname.lastname@example.org .
* The MErCuRIC project has received funding from the European Union’s Seventh Framework Programme for research, technological development and demonstration under grant agreement no 602901
The NI Cancer Research Consumer Forum welcomes you to a free Public Information Evening about Bowel Cancer.
The event will be held:
Tuesday 2 December 2014, 7pm-9pm
Cancer Centre, Belfast City Hospital, level 1, Seminar Room 3
Talks will focus on new developments in bowel cancer research and care and a patient perspective. There will also be information stands during a refreshment break and an opportunity for questions to clinicians in the field.
The Bowel Cancer Public Information Evening - poster and are available.
If you want to find out more, or wish to register your interest, please contact Ruth Boyd at the NI Cancer Trials Centre:
Tel: 028 9063 8468 or e-mail email@example.com
Look forward to seeing you!
Professor James McElnay, Dr Richard Wilson and Professor Stuart Elborn
Professor Joe O'Sullivan speaking at the conference
Health Minister Edwin Poots welcomes Scientific and Medical personnel from 19 Global Pharmaceutical companies to Belfast
Scientific and medical personnel from 19 global pharmaceutical companies gathered in Belfast on 15 September 2014 for a 24 hour visit to Northern Ireland to meet with leading local clinical researchers and discuss how Northern Ireland can best position itself to increase levels of collaboration around clinical research with Industry.
The visit was organised by a steering group representing Northern Ireland’s Health & Social Care R&D Division, ABPI NI Innovation Group, HSC Innovations, Queen’s University, University of Ulster and Invest NI. It was organised as an opportunity for medical and scientific staff from global pharmaceutical companies to engage with key Government, Health & Social Care and academic stakeholders in Northern Ireland. The goal of the event was 'to to build relationships between the Northern Ireland and pharmaceutical industry clinical researchers with a view to increasing collaborative research'.
Minister Poots commented: 'Delivering successful clinical research depends on many factors, including effective partnership and collaboration, physical infrastructure, efficient processes and supportive policy environment. Both HSC R&D and InvestNI are helping to promote NI’s clinical trials capacity as a magnet for industry investment from the pharmaceuticals and medical devices sectors.'
Speaking at a dinner in Queen’s to welcome the pharmaceutical companies to Belfast, the University’s Vice-Chancellor, Professor Patrick Johnston, said: 'Queen’s already works alongside some of the world’s leading pharmaceutical companies on a daily basis in ensuring the latest research discoveries can benefit both patients and the economy. We are therefore delighted to welcome the new opportunities presented by this visit to further enhance the growth of the Life Sciences sector here in Northern Ireland and the potential for significant breakthroughs in patient care.'
The UK is in a tough global race to attract investment and compete with other economies across the world in order to sustain and grow its vibrant and innovative research community and advanced manufacturing expertise. We cannot underestimate the growing challenges for innovation in the UK. The UK’s global share of clinical trials has fallen in recent years and the UK is slipping down the table in terms of the national origin of the leading 100 global medicines by sales. Northern Ireland is well placed to increase its share of competitive R&D funding but needs to be focused to deliver on this.
Life Sciences is one of the priority sectors that will drive the future growth of Northern Ireland's economy. Over the past few years, Northern Ireland industry, academia and government have made significant commitments to the development of Life Science capabilities. Significant funding has been committed for infrastructure enhancement, collaborative research, new product development and staff training initiatives.
The success to date has been based on a model of collaboration in which Government, academia, clinical and the private sector have worked together in partnership in developing a vibrant Life Sciences sector. We look to continue this success into the future through building on these existing partnerships and developing new ones in new and challenging areas of growth.
The Northern Ireland Executive is working on a Life and Health Sciences Strategy. This strategy will be cross departmental with input from the Department of Enterprise, Trade and Investment (DETI), Department of Health, Social Services and Public Safety (DHSSPS) and Department for Employment and Learning (DEL). The MATRIX Life and Health Sciences panel will inform government on this strategy. The group output will be a foresight report informing government on future opportunities for growth in Life and Health Sciences in Northern Ireland.
Association of the British Pharmaceutical Industry (ABPI) – ABPI NI currently represents 36 global research based pharmaceutical companies with a presence in NI. The Innovation group’s goal is 'to deliver a measurable increase in contribution to the NI Health and Wealth policy agenda through a programme of activities aimed at increasing the presence and impact of the research-based pharmaceutical sector. To ensure that our Industry is seen as a key stakeholder in delivering the Health and Wealth agenda'.
MATRIX - The Northern Ireland Science Industry Panel provides advice to NI government on maximising the economic impact of R&D, Science and Innovation. Their vision is an economy based on exploiting our strengths in Science and Technology led by business, inspired by academia and facilitated by government.
The latest issue of the Northern Ireland Cancer Research Consumer Forum's newsletter is now available, Consumer Impact Issue 10
Members of the NI Cancer Research Consumer Forum Members who hosted ‘A Celebration of World Cancer Day’
Colm Donaghy, Chief Executive, Belfast HSC Trust, with Health Minister Edwin Poots and Professor Richard Kennedy, McClay Professor of Medical Oncology and Honorary Consultant in Medical Oncology, Belfast HSC Trust
On 4 February 2014 the NI Cancer Research Consumer Forum (NICRCF) marked World Cancer Day by hosting an event to celebrate both local and international progress in the fight against cancer. The event, held in the McClay Library Auditorium at Queen’s, was attended by various stakeholders in cancer care, including Chief Executive Colm Donaghy and Health Minister Edwin Poots.
Following lunch, kindly funded with the support of Friends of the Cancer Centre, Mrs Margaret Grayson, Chair of the NICRCF, opened proceeding with an outline of the Forum’s role, which includes patients and carers working in partnership with cancer researchers. She commented, ‘We’re delighted to host this event during the launch of the European Cancer Patient’s Bill of Rights, a framework that endorses the principles of equity and partnership and acknowledges the vital importance of research as the foundation for optimal, cost-effective care throughout the patient journey.’
The Minister welcomed an invitation to address the audience, and he described the value of early cancer diagnosis and the important role of research in transforming practice. He noted that the Bill of Rights, like the Cancer Services Framework, sought to address the whole journey of cancer, and advocated that all opportunities to improve cancer survival should be explored.
In keeping with the international theme, Mr Conan Donnelly, from the NI Cancer Registry, reported recent Eurocare 5 findings, highlighting that NI survival rates were improving for most cancers and were higher compared to UK/Ireland, but lagged behind the best performing countries such as Sweden and Norway. An International Cancer Benchmarking Partnership study indicated that while awareness of cancer symptoms was generally high in NI, participants mentioned barriers to reporting symptoms to the GP, such as ‘worry about wasting the doctor’s time.’
Professor Richard Kennedy, QUB, BHSCT and Almac, described how local cancer research can have a worldwide impact. He illustrated this with several examples:
- New tests developed locally that will inform treatment choices in colorectal and breast cancer, also being used in USA
- A programme of European clinical trials in colorectal cancer, led from Belfast
- A new cancer drug developed by QUB and Almac scientists
Professor Kennedy emphasised how integrated scientific and clinical research programmes, about clinically relevant issues, was a vital approach to improve patient outcomes.
The audience watched a video of the presentation of Professor Mark Lawler, QUB, taking place simultaneously in Strasbourg, for the launch of the European Cancer Patient’s Bill of Rights. Professor Lawler described the Bill of Rights as a patient-centred Charter providing a framework to deliver optimal standards of cancer research and cancer care for every European citizen. He outlined its underpinning principles:
- to receive accurate information and be involved in their own care
- to access specialised cancer care underpinned by research and innovation
- to cost effective health systems that ensure optimal cancer outcomes
Concluding the programme, Mr Paul Burns, a member of the NICRCF, gave a personal perspective on the Bill of Rights. He commented ‘We're fortunate to have excellent cancer facilities here in Belfast, and I personally have benefited from the clinical trials being run here. The Bill of Rights highlights the importance of access to information, and that includes access to information about such trials.’
The NICRCF is co-ordinated by the NI Cancer Trials Centre, Belfast City Hospital. Further information is available at http://www.qub.ac.uk/research-centres/nictc/Gettinginvolved/
The latest issue of the Northern Ireland Cancer Research Consumer Forum's newsletter is now available, Consumer Impact Issue 9.
You are warmly invited to a 'Celebration of World Cancer Day' hosted by the Northern Ireland Cancer Research Consumer Forum at the McClay Library Auditorium (see Campus Map, Number 11, Library at Queen's), Queen's University Belfast, on Tuesday, 4 February 2014 at 12.30 pm.
We are delighted that, to mark World Cancer Day, we will be hearing exciting presentations and have a live link with the launch of the European Cancer Patient's Bill of Rights, taking place at the European Parliament in Strasbourg.
Our speakers will include:
Mr Conan Donnelly, researcher, NI Cancer Registry, will report on trends in cancer survival in Northern Ireland in the context of findings of the recent EUROCARE study into European cancer survival and emerging results from the International Cancer Benchmarking Partnership.
Professor Richard Kennedy, McClay Professor of Medical Oncology and Honorary Consultant in Medical Oncology, Belfast HSC Trust, will present on local cancer research in the international context of cancer patient treatment.
The European Cancer Patient's Bill of Rights represents a catalyst for change, a Charter that provides a framework to deliver optimal standards of cancer research and cancer care for every European citizen. We will link to the launch of this Charter in Strasbourg for speeches by Professor Patrick Johnston, Dean, School of Medicine, Dentistry and Biomedical Sciences and Professor Mark Lawler, Chair in Translational Cancer Genomics, who have been instrumental in the development of this patient-centred international initiative.
We very much hope you can join us for this celebration. Please reply to Sharon Dunwoody, firstname.lastname@example.org.
Please click here for the invitation 'Celebration of World Cancer Day'
Please click here for the QUB Campus Map
The goal of the NICTN is to promote high quality cancer care in Northern Ireland by inclusion of patients on a geographically more equitable basis into cancer clinical trials, translational research and other well-organised cancer research studies. With the co-ordination of the NI Cancer Trials Centre based at the Belfast City Hospital, the Network has established strengths in the following areas of clinical and translational research: haematological malignancy, GI, GU, gynaecological, breast and lung cancer, radiation and paediatric oncology. Other priorities for further development are surgical trials, supportive and palliative care, imaging trials, prevention and early diagnosis trials and survivorship studies.
The Northern Ireland Cancer Research Consumer Forum is delighted to announce the publication of the NICRCF Annual Report Year 2.
Radiotherapy evening - Forum members and speakers
From the discovery of X-Rays in 1895, to the latest advances in cancer treatment - patients, public and staff attending an information evening listened with fascination to talks on exciting developments in radiotherapy research in Belfast.
‘Cancer Research with the X-Factor’ was a public event hosted by the NI Cancer Research Consumer Forum (NICRCF) on 16 October 2013, to help raise awareness about the work of researchers and staff, working in radiotherapy, and fervently committed to driving advances in cancer care through research. Radiotherapy is an important cancer treatment that currently accounts for 40% of all cancer cures. The audience gathered in the Cancer Centre, Belfast City Hospital, and the Chair of the NICRCF, Margaret Grayson, opened the evening by describing the role of Personal and Public Involvement Representatives in cancer research. These patient/carer representatives work in partnership with doctors and scientists to maximise the patient benefit of cancer research in NI. Anyone interested in getting involved in this work was invited to join the NICRCF.
Professor Joe O’Sullivan, Consultant Clinical Oncologist, Belfast Health & Social Care Trust (BHSCT) / Professor of Radiation Biology, Queen’s University Belfast (QUB), described how research-driven innovations in radiotherapy and radionuclide treatments had led to faster availability of more effective treatment for patients in NI. An example of this was the CHHiP trial in prostate cancer, which paved the way for the rapid introduction of Intensity-Modulated Radiotherapy (IMRT) as the new standard in prostate cancer radiotherapy at the Cancer Centre. A key to the success of the research strategy was a multi-professional approach, involving close collaboration of experts in clinical radiotherapy, radiation science and physics, within BHSCT and the Centre for Cancer Research and Cell Biology, QUB. Professor O’Sullivan emphasised that research not only provided value for money, but it was a vital quality driver, and hence core to a high quality health service.
Professor O’Sullivan also highlighted how, at the heart of research, we are indebted to the patients who volunteer to take part in clinical trials, and their families who support them. The valuable contribution of the NI Cancer Research Consumer Forum was also acknowledged, both as research partners and in passionately profiling the importance of cancer research within our health service, recognising its significance to patients and the public.
Dr Aidan Cole, Specialist Registrar, BHSCT / Clinical Research Fellow, QUB, described how research was increasing the understanding of the biological effects of radiation on cancer cells and their surroundings. This work translated to approaches to minimise side-effects to normal tissue while maximising the radiation dose to the target cancer. Dr Cole also described his work enhancing the accuracy of radiotherapy in lung cancer, through tracking the small movement of a lung tumour during breathing, and tailoring treatment accordingly.
After a break for refreshments, chat, and a browse at information stands, Margaret Grayson informed the audience about the website where they could see a video of a presentation by Paul Burns, who described his personal experience as a patient taking part in a radionuclide clinical trial in Belfast. This had been recorded at a public information event in September 2012 and had wowed the audience with its honesty and insight.
Dr Gerry Hanna,Consultant Clinical Oncologist, BHSCT, provided an update on radiotherapy research in lung and breast cancer. Dr Hanna highlighted how research undertaken in Belfast in the past had helped define some of today’s gold-standard treatments in breast cancer. He reported that several clinical trials are currently open or due to open soon, in both breast and lung cancer. Dr Hanna illustrated how better treatment accuracy was enabling higher individualised radiotherapy doses to be delivered safely, with the potential of offering several benefits: increased chance of curing cancer, decreased side-effects and reduced treatment visits.
Dr Suneil Jain, Consultant Clinical Oncologist, BHSCT / Senior Lecturer, QUB, highlighted future directions in prostate cancer research echoing key themes of the evening - curing cancer and reducing treatment side-effects. He demonstrated how research supported the introduction of treatment innovation in Belfast. Current research involved the introduction of Image-Guided Radiotherapy and Stereotactic Ablative Radiotherapy (SABR). Research was also informing treatments involving radionuclides and brachytherapy, and through research into biomarkers indicators of treatment response and side-effects were being identified. This could help doctors make even more individualised treatment decisions for patients in the future.
Throughout the evening speakers acknowledged how critical team work and collaboration were, and acknowledged the support of the teams of staff supporting all radiation therapies in BHSCT, the NI Cancer Trials Centre, and key funders such as Cancer Research UK, Experimental Cancer Medicine Centre Network, Friends of the Cancer Centre, HSC Research and Development Division, Movember and Prostate Cancer UK.
The evening concluded with a Q&A session chaired by NICRCF member Geoff Hill. In response to questions, speakers elaborated on how research was maximising treatment benefit and also helping to inform new approaches in cancer for the next generation.
Informal feedback from the event was very positive. The expertise of the speakers and their profound commitment to advances in patient care through research and innovation was evident, as was the interest, enthusiasm and support of the NICRCF and the public. Mr Allister Murphy, a member of the NICRCF commented; ‘From a cancer patient perspective I was amazed to see the huge advances that have been made in radiotherapy technology in only a few years. The influence of research is clearly evident in every aspect of radiotherapy development and credit must go to the research teams and the patients who volunteer. Events like this help the public see the tangible benefits of research.’
The evaluation of 'Building Research Partnerships' in Northern Ireland is now available. 'Building Research Partnerships' September 2013
Want to know more about the exciting developments in radiotherapy 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 radiotherapy 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 including how developments in radiotherapy are benefitting patients with breast, prostate and lung cancer.
Leading researchers in cancer research will provide unique insights into the exciting developments happening here on our doorstep in Northern Ireland!
Please click here for Flyer 'Cancer Research with the X-Factor!'
Please click here for Programme 'Cancer Research with the X-Factor!'
(Ruth thanking staff recently at the CRUK shop in Botanic Ave)
We are delighted to announce that on Friday, 24 May, Ruth Boyd received a “Research Engagement – Flame of Hope” award to recognise her dedication and passion for raising awareness of cancer research in Northern Ireland. This Award is given to an outstanding ambassador for Cancer Research UK; someone who has shown exceptional commitment to raising awareness of our pioneering research and who has been an inspiring spokesperson for the work that we do.
Ruth received this award because of the time, energy and enthusiasm she puts into attending public events within the Belfast CRUK Centre and out in the community to raise the profile of the Belfast CRUK Centre. She is a familiar and friendly face amongst CRUK supporters and can always be relied on to give inspiring talks about the research taking place here in Belfast and at the Cancer Units across the region.
The Award also recognises the amazing work Ruth has done in setting up the Northern Ireland Cancer Research Consumer Forum – a panel of people affected by cancer who help shape the cancer research taking place here in Northern Ireland. Supported by Sharon Dunwoody, Ruth has set up a fabulous training programme for Forum members to ensure they are able to successfully champion the voice of cancer patients in the development of research proposals and trial protocols.
Ruth’s dedication to her work is summed up by Prof David Waugh, who said: 'Her compassion for patients and her dedication to ensuring the patient voice is always heard and represented when we set our research agenda, is true testimony to her dedication and leadership'.
Katie Scott, Belfast Research Engagement Manager, said, 'Ruth has been an utter joy to work with on public engagement activities over the past year and I am absolutely delighted that her dedication and commitment to raising the profile of cancer research is recognised at a national level. Well done Ruth!'
If you would like to read more about the Award visit: http://www.cancerresearchuk.org/science/news/Flame-of-Hope-Awards
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 email@example.com
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 firstname.lastname@example.org
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: email@example.com
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 firstname.lastname@example.org.
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