TrialBlazer Ken McBride highlights the importance of cancer research for International Clinical Trials Day

              

TrialBlazer Ken McBride

Ken McBride has been an enthusiastic ambassador for cancer clinical trials ever since he took part in a prostate cancer study.

Ken is a ‘TrialBlazer’, part of a campaign raising awareness about the amazing role volunteers play in research https://bepartofresearch.nihr.ac.uk/trialblazers/ .

The message of the campaign is that volunteering in research helps people live healthier and better lives, now and in the future. Ken shares his research story to mark International Clinical Trials Day 20 May 2022 and tells us why supporting cancer trials is so important to him.

Ken was diagnosed with prostate cancer in December 2014. Ken said, ‘When someone says the words ‘you have cancer’, even if you’ve had an inkling, it comes as a shock – there’s no other way to describe it. I was started on hormonal therapy and referred to oncology at the NI Cancer Centre. I met Professor Joe O’Sullivan and I can’t stress enough how much he put me at ease at that first visit, which was incredibly important because obviously I was nervous. I was told about the treatment and what to expect and I was told about the Stampede Trial and asked if I was interested in taking part. For me it was a no-brainer and I jumped at the chance.’ Ken explains, ‘All treatment is based on trials. My treatment was based on what people before me went through. Taking part in trials may be something unknown but it allows treatment to be tailored and advancements to be made. If you take part in a trial you are contributing to research, to the future.’

Describing his radiotherapy treatment Ken said, ‘All the staff were amazing. The radiotherapy staff would put you at ease and they were always keen for you to ask questions. There was no such thing as a stupid question and they were only too happy to answer. Currently I’m still on drug treatment, which is tweaked sometimes due to side-effects, and I continue to be monitored.’

Ken is keen to reinforce the importance of early diagnosis and getting symptoms checked out as soon as possible, advising, ‘Listen to your body and don’t be put off if it’s difficult getting a GP appointment, just keep persisting until you’re seen. In my case, if I’d left it much longer the outcome could have been very different.’

Ken shares his enthusiasm for cancer research saying, ‘I took part in research and, to be honest, if I was given the opportunity to take part in any sort of trial again, I would grasp it with both hands. It’s the only way we’re going to assist researchers get satisfactory outcomes to this disease in all its shapes and forms. Research helps us understand why cancer treatments affect people in different ways. Brave people before me took part in research and I’m happy if I can join those people and make it better for someone in the future.’

Ken McBride encouraging others to get involved in cancer research

Ken joined the NI Cancer Research Consumer Forum (NICRCF) in 2016 and has been active in Personal and Public Involvement (PPI) in research. Already supportive of prostate cancer research, Ken became a member of the NICRCF Prostate Cancer PPI Advisory Group, working with researchers such as Professor Joe O’Sullivan, bringing forward Belfast-led clinical trials and other research. Ken said ‘I also want people to know about how much research is going on behind the scenes in Belfast and what Belfast is leading on.’ Ken is so passionate about the research in Belfast, he has spoken to the media about his involvement and has supported events and open days to encourage others to get involved.

The NI Cancer Trials Network (NICTN) wants to send out a massive thank you to all the patients across Northern Ireland, like Ken, who volunteer to participate in cancer clinical trials. What they do is invaluable to finding better ways to prevent, diagnose and treat cancer.

The NI Cancer Trials Network is also indebted to the members of the NICRCF. PPI partners like Ken help to prioritise and shape cancer research for the benefit of patients. Anyone interested in becoming a member of the NICRCF should contact Ruth Boyd at the NICTN – e-mail nictn@belfasttrust.hscni.net .

Information about cancer clinical trials co-ordinated by the NICTN can be found at the website https://nictn.hscni.net .

 

Cancer clinical trials champion Wendy Cunningham celebrates International Clinical Trials Day

Wendy Cunningham supporting Be Part of Research campaign

Wendy Cunningham commenced the role of Clinical Research Nurse in the NI Cancer Trials Network (NICTN) in 2003. Since then she has been an amazing advocate and champion for cancer research, co-ordinating over 50 studies and caring for the patients recruited to these trials at the Belfast City Hospital, alongside surgical, oncology and other colleagues. No wonder Wendy has been invited to speak in a national meeting to share her tips on recruitment success!

To mark International Clinical Trials Day on 20 May 2022, we asked Wendy what she enjoys most about her role. Wendy explained, ‘I’ve got time to spend with the patients and it’s very fulfilling. You can help them in lots of ways and you’re with them across a range of settings, whether it’s in surgery, in-patients or out-patients, so you’re like their friend in hospital. They don’t feel abandoned when they go home either, because they can ring you. Wendy continued, ‘You may be dealing with complex cases and it can be really difficult if a patient relapses, but I don’t get   burnout because overall you’re helping these people to maybe live a bit longer, to have better quality of life, to have a better experience.’

Over the years Wendy has worked with a number of clinical teams focused on various cancers including gynae, melanoma and prostate cancer. Wendy said, ‘I love working with all the teams. We have good working relationships and respect for each other. There’s great variety too. In gynae I’m co-ordinating studies in surgical, ovarian and endo-cervical teams, caring for cancer patients and also women who are BRCA positive receiving risk reducing surgery.’

Wendy Cunningham, Clinical Research Nurse

Always excited about the positive impact of clinical trials, Wendy described how several trials she has worked on have led to today’s standard care. ‘The Chorus study for instance has demonstrated the value of neoadjuvant chemotherapy in advanced ovarian cancer. PARP inhibitors, a type of targeted treatment, have made a huge difference due to prolonged disease responses for some women. When response to treatment is achieved it can be transforming, and people feel safe having the on-going support of the research team.’ Wendy continued, ‘There has also been a lot of success in prostate cancer such as the radium trials and the studies that have led to the introduction of drugs like Abiraterone, Enzalutamide and Apalutamide.

Asked about the future, Wendy responded, ‘I will continue to be part of the fight against cancer working with the NICTN team. Clinical trials pave the way for advances in the treatment and management of cancer. Much has been achieved but there is much still to do!! I want to thank all the patients who have given the gift of participating in clinical trials, each one is precious! I also want to thank all the staff who work with me, without their interest and support I could not do my job to the best of my abilities.’

The NICTN co-ordinates a number of cancer clinical trials. Details are available at the website https://nictn.hscni.net .

Meet the New Chair of the NI Cancer Research Consumer Forum – Aidan McCormick

The NICTN and NI Cancer Research Consumer Forum (NICRCF) are delighted to report Aidan McCormick took up the position of Chair of the NICRCF in December 2021. Aidan, who was an active member of the Forum since 2019, brings a wealth of experience to the role, not only as a Non-Hodgkins Lymphoma patient for 11 years but as a member of Queens University Belfast PPI Network and retired educationalist. He is a Governor of the Southern Regional College. Married to Geraldine with two grown up daughters, he loves his home life and his greenhouse.

As a PPI representative and Service User, Aidan says ‘I take great pride in the work of our Medics, Researchers and Academics. Proud of those Patients, their families and Carers who travel the journey.’

The NICTN and NICRCF members congratulate Aidan on his appointment to the role of Chair and look forward to the exciting future journey of the Forum with Aidan.

Aidan McCormick – Chair, NICRCF

 

NICRCF Thank Margaret Grayson for 10 Amazing Years as Chair of the Forum

In December 2021 members of the NI Cancer Research Consumer Forum thanked and praised Margaret Grayson for her 10 amazing years as Chair of the Forum. Margaret is stepping down from the role, having led the Forum from its inception in 2011. During this time Margaret has influenced the changing culture in cancer research in NI, which now fully embraces Personal and Public Involvement.

Forum members thanked Margaret for her leadership and friendship. Many members shared their personal reflections on the impact Margaret has and the privilege it is working with her. Margaret’s passion is infectious and she is inspirational.

Margaret thanked Forum members for their support and great work and wished the new Chair, Aidan McCormick, well as he took over the new role.

Margaret continues as an enthusiastic member of the Forum and retains her many other local, national and international PPI roles.

The immense gratitude for Margaret’s achievements and on-going PPI work is echoed by the cancer research community.

See more about Margaret’s amazing 10 years as NI Cancer Research Consumer Forum in these slides.

Thank you to Margaret for 10 amazing years Dec 2021_on-line version

Opportunity to join National Cancer Research Institute (NCRI) Networks

Members of the cancer research community are now able to join the NCRI Networks. Anyone interested in cancer research can join, including (but not limited to) clinicians, basic scientists, statisticians, nurses, allied health professionals, patients and carers and early career researchers.

The NCRI Networks will become a central hub of people working within the cancer research field that will be able to get involved with the work of the NCRI Groups, ensuring they are wide-reaching, inclusive and diverse. NCRI Groups are a central part of NCRI activity, acting as a forum to bring the cancer research community together and coordinate activity to develop new research.

The benefits of joining one (or more) of the NCRI Network(s) are:

  • Hear about membership opportunities for the NCRI Groups.
  • Receive invitations to sit on panels for various NCRI Group activities such as proposal guidance meetings for the NCRI Groups.
  • Opportunities to participate in consultations for National Institute for Health and Care Excellence (NICE) guidelines.
  • Become involved with the NCRI Groups strategy development process.
  • Receive key updates from NCRI Groups.
  • Be the first to hear about NCRI Group workshops and events.

There are no prerequisites to be part of the NCRI Network – anyone is welcome to join and members can sign up or leave at any time.

Find out more and link to an application form here:

Join the NCRI Networks | Public Health Agency – Research & Development in Northern Ireland (hscni.net)

NCRI Networks – NCRI

CIBRAC trial answers question about feasibility of a chemoprevention strategy in BRCA1 mutation carriers

Title: Chemoprevention in BRCA1 mutation carrier – a proof of concept study (CIBRAC)

Sponsor: Belfast HSC Trust

Chief Investigator: Mr Stuart McIntosh, QUB/BHSCT

Investigators: Prof Paul Harkin, QUB, Dr Kienan Savage, QUB, Dr Gillian Prue, QUB

Research Fellow: Dr Aideen Campbell, QUB/BHSCT

Ethical Approval: Office for Research Ethics Committees Northern Ireland

Co-ordinating Centre: NI Cancer Trials Network at Belfast HSC Trust

Supported by: Cancer Research UK and Belfast Experimental Cancer Medicine Centre (ECMC)

 

Study Background

Women with a BRCA1 gene mutation have a very high lifetime risk of developing breast and ovarian cancer. Currently, women wishing to reduce this risk are offered surgical removal of their breasts. The study aimed to develop a means of reducing the risk of cancer using drugs to lower levels of oestrogen, to avoid the problems associated with surgery.

The CIBRAC Study aimed to:

  1. Establish the feasibility of trial treatments as a chemopreventive strategy in BRCA1 mutation carriers and compliance to such treatments
  2. Establish tolerability of trial treatments and procedures

The study was open to recruitment between April 2017 and December 2019. Women were approached regarding the study, either in person through Family History Clinics in Belfast Trust, by post through the High Risk Breast Screening Programme at the Northern Trust or via BRCA LinkNI. This strategy aimed to reach the available population of women in Northern Ireland who were potentially eligible to participate in the study i.e. women age ≥18 years with a known pathogenic BRCA1 mutation, intact ovaries and no previous breast or ovarian carcinoma, with no history of malignancy and no previous risk reducing surgery.

The study intervention involved three months of either tamoxifen or goserelin/anastrazole, followed by a one-month washout period and then a crossover to a further three months of treatment. Breast tissue, core biopsies, urine and blood samples were obtained at baseline, after three months of treatment and at study conclusion.

Results

In total, approximately 2% of the screened population consented to participate and were registered on the study. The study completed prior to meeting the recruitment target due to the low numbers of women who wished to take part.

A study amendment incorporated a qualitative study designed to assess participants’ reasons for accepting/declining trial participation.

The most commonly stated reasons for declining treatment related to lifestyle, with women reporting family or educational commitments, or generally being too busy to participate (7 women). Only one patient reported concern about side-effects as their reason for declining. However, the formal qualitative study that was incorporated into CIBRAC was also discontinued due to insufficient patients consenting to take part in the study interviews.

Despite not reaching the recruitment target, the study informed the primary objective and indicated that this particular chemopreventive strategy was not feasible in this population. Other studies have also indicated low interest in chemoprevention studies.

Personal and Public Involvement

This study illustrated the significance of Personal and Public Involvement (PPI) throughout the lifecycle of a clinical trial. Investigators liaised with the BRCA Link NI group at the concept stage of the research. Interestingly, no issues were raised relating to the acceptability of the therapeutic approach, and onward study development was supported. Investigators linked with both BRCA Link NI and the NI Cancer Research Consumer Forum (NICRCF) in the development of the Participant Information Sheet, Consent Form and Qualitative study participant documents. Hazel Carson, MBE, was PPI Representative in the study Trial Management Group. Hazel had a vital role including identifying ways to expand the reach of the study across the potentially eligible study population. Lack of recruitment, despite impactful PPI, suggests appropriate study quality and reinforces the conclusion that chemoprevention using a combination of goserelin and anastrazole to suppress oestrogen, as an approach for risk reduction in premenopausal women, was not feasible.

Thanks

Mr Stuart McIntosh, NICTN and all involved in the conduct and management of the study wish to thank all the participants in both the intervention and the qualitative aspects of the study and all the women who considered participation in the study. Thanks also to BRCA Link NI, NICRCF, members of the Trials Management Group and study funders Cancer Research UK and Belfast ECMC.

NICTN support Be Part of Research campaign for International Clinical Trials Day

Andrea Patterson and Diane Law, supporting Be Part of Research, Belfast Trust

 

Angela Berry and Jennifer Foreman, supporting Be Part of Research, South Eastern Trust

 

 

 

 

 

 

 

 

 

 

NICTN staff celebrated the value of research for International Clinical Trials Day on 20 May 2021.

This year the Be Part of Research campaign highlighted the record number of research volunteers and the rapid pace of breakthroughs in COVID-19 research during the pandemic. The challenge now is to sustain research momentum and volunteers across other conditions.

NICTN staff utilised various approaches within their Trusts to profile the campaign, the role of the research nurse and raise awareness of clinical trials. See below examples of how they successfully shared the message with Trust staff, patients and the public.

International Clinical Trials Day 20th May 2021 | South Eastern HSC Trust (hscni.net)

https://southerntrust.hscni.net/be-part-of-research/

https://westerntrust.hscni.net/a-day-in-the-life-of-clinical-trials/

Be Part of Research poster for web

 

Heather’s Story – Why Clinical Trials Matter

Heather is participating in a Phase I clinical trial at the NI Cancer Centre, Belfast City Hospital. As part of the celebration of International Clinical Trials Day on 20th May, she shares her story and explains why clinical trials are important to her.

What has led up to taking part in an early phase cancer clinical trial?

I’m a very keen cyclist and participated in cycling events such as the Mallorca 312. In January 2018 I attended my GP for bleeding ‘down below’ and was advised to take over-the-counter treatments for haemorrhoids. Months later, I realised the symptoms were not improving and I sought a private consultation. The doctor examined me and within minutes I received the news ‘this is very serious, there’s a tumour there, this is cancer’. I had rectal cancer.

In October 2018 I started a combination of chemotherapy and 5 weeks of radiotherapy treatment followed by further chemotherapy, then major surgery with Mr Aidan Armstrong and more chemotherapy for secondary cancer in the lung and liver. I then needed a third line of treatment, Lonsurf, which I stopped when the scan showed disease had grown.   My oncologists, Dr Richard Park, Dr Robert Harte and Dr Gemma Corey and all the team have been brilliant and I could not thank them enough.

How did you feel about taking part in research?

I started the clinical trial over a month ago. I always liked the idea of trying clinical trials and have had a family member who had a great experience – my cousin went on a clinical trial a number of years ago and it has kept everything under control for him.

I’ve been told this is not curable. I’m not going to get better but I could get something to keep it at bay. I prefer that option to ‘nothing we can do’. Now I’m with the research team – Professor Victoria Coyle and the research nurses Alison, Diane and Joanne. If there were no clinical trials, I don’t know where I would be.

What’s it like taking part in the clinical trial?

Four weeks after stopping the Lonsurf I got through study screening and started treatment. Being on the clinical trial has been very straightforward – weekly assessments, bloods and off I go. I take the clinical trial tablets in the morning and evening. The first month I had to record my blood pressure at home. I feel a bit tired but I’ve no sickness.

I have my scan on Friday and I will see how it goes. If disease stayed stable that would be very very positive. I remain positive – one day at a time and keep going, that’s all I can do.

Going through treatment – what difference has the COVID-19 pandemic made?

It can be hard with COVID – before I would have enjoyed weekends away, a wee break, now it’s very isolating. Dealing with that on top of everything else has been challenging!

I’ve not a bad word about the NHS from the day and hour I have seen the doctors and right through COVID. I have never had a worry. I got my treatment every week. My husband usually drops me off for hospital visits. In the early stage before the pandemic I would have had someone accompany me, but I’m ok going to the clinic by myself.

During the first wave of the pandemic there was a temporary move of treatment from the Bridgewater Suite in the Belfast City Hospital to the Ulster Independent Clinic and everything went as smooth as anything. The experience I have had – everyone has just been amazing – you’re one big team and you don’t realise the impact you have on people’s lives!

What else is important to you?

I live with my husband Martin and the dog. I have great support from my husband. We have a good wee team at home!

I also have to mention the District Nurses that have been calling with me every day to dress a wound since my subsequent surgery in October 2020 – they have all been amazing to me!

I continue to work and like to keep focused.

I always think, if only I had checked myself more. I always like to tell others about my experience so that I can encourage others to go to their GP and make sure you get a full examination!

NICTN congratulates Hazel Carson awarded MBE

NICTN send massive congratulations to Hazel Carson, a member of the NI Cancer Research Consumer Forum, who has been awarded a MBE in the New Year Honours for services to people with genetic high risk of cancer in Northern Ireland.

Hazel is very deserving of this award and she is a total inspiration! Hazel set up BRCA Link NI BRCA Link NI Home (brcani.co.uk) , a voluntary organisation helping people to access information and support about BRCA genetic mutations whilst raising awareness of Hereditary Breast and Ovarian Cancer.  Hazel’s on-going dedication and enthusiasm are immense and her influence on services and research alike are totally invaluable alongside so much more, including the wonderful individual support she provides to so many.  She shares her own story here About BRCA Link NI (brcani.co.uk).

Deserved recognition for this brilliant service to the community!