The Cancer Trials Ireland Podcast

GDPR and its impact on clinical trials in Ireland is a critical issue. We explore why the timeline for initiating trials is extending, often leading organisations to seek opportunities in other countries.We hear how experiences shared by patient advocates, such as our guest Patrick Kilvahan, underscore the critical need for systemic changes to ensure that clinical trials are an integral part of patient care. Tragically, two other patients who were eligible for the trial did not survive the waiting period due to delays. This poignant account underscores the urgency of addressing the bureaucratic hurdles that can cost lives.We also speak with expert guests Paul Egan and Rose Kidd who argue a need for a ministerial order to streamline processes, emphasising that the public interest in clinical research should take precedence.THINGS WE SPOKE ABOUTOverview of Delays in Clinical Trials in IrelandThe Role of GDPR in Clinical Trial DelaysPatient Perspectives on Data Sharing in Clinical TrialsThe Need for Change in GDPR InterpretationChallenges in Bringing Trials to IrelandMetrics and Ireland's Standing in EuropeGUEST DETAILSPatrick Kilvahan is Chair of Cancer Trials patient consultants committee, who has also had his own experience with waiting times for clinical trials. Paul Egan is a Senior Counsel and member of the Board of Cancer Trials Ireland with particular experience around GDPR. Rose Kidd, is President of Global Operations Delivery - ICON, who works to drive clinical trials into Ireland and is all too familiar with the barriers to care. MORE INFORMATIONCancer Trials Ireland is a registered charity and the leading cancer research trials organisation in Ireland. It aims to provide every patient with cancer access to high-quality and potentially life-altering cancer trials and to make Ireland a highly attractive location to open cancer trials. Since 2000, 623 cancer trials have opened in Ireland, with more than 33,500 patients taking part. In 2022, a survey of public attitudes revealed three in five people in Ireland would take part in a clinical trial. Almost all cancer clinical trials available in Ireland are listed on the Cancer Trials Ireland website: www.cancertrials.ie/open-trials. Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society. It also receives income from pharmaceutical companies and international research groups, as well as through philanthropic giving and donations from members of the public.Since 2017, Cancer Trials Ireland has rolled out an annual campaign (Just Ask) to promote public awareness and understanding of clinical trials and associated issues. Just Ask 2023 is support through unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.

Ireland is in a fortunate position to have a dedicated body managing cancer trials, however, we are always looking to improve our efficiency when it comes to start-up times.Today we’re speaking to two members of the Cancer Trials Ireland team who have been working tirelessly to rethink our procedures, how they work with tight regulatory requirements and, most importantly, how we can reach that top 10% in the EU for study start times.Our guests are both dedicated members of the Cancer Trials Ireland team. Angela Clayton-Lea joined the team in 2018 as Chief Operations Officer and Olivia McLoughlin has been with the team 18 years and is currently Head of Clinical Operations. THINGS WE SPOKE ABOUT●       Appointing an experienced COO and Start-up Team●       Implementing a ‘Lean’ approach to processes●       Improving Ireland’s current position in Europe for start-up times●       Upskilling staff to work within strict regulations more efficiently●       Hopes for the future of clinical trials and patient careGUEST DETAILSAngela Clayton-Lea joined Cancer Trials Ireland in October 2023 as Chief Operations Officer. https://www.cancer.ie/about-us/about-the-irish-cancer-society/who-we-are/our-leadershipMORE INFORMATIONCancer Trials Ireland is a registered charity and the leading cancer research trials organisation in Ireland. It aims to provide every patient with cancer access to high-quality and potentially life-altering cancer trials and to make Ireland a highly attractive location to open cancer trials.Since 2000, 623 cancer trials have opened in Ireland, with more than 33,500 patients taking part. In 2022, a survey of public attitudes revealed three in five people in Ireland would take part in a clinical trial. Almost all cancer clinical trials available in Ireland are listed on the Cancer Trials Ireland website: www.cancertrials.ie/open-trials.Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society. It also receives income from pharmaceutical companies and international research groups, as well as through philanthropic giving and donations from members of the public.Since 2017, Cancer Trials Ireland has rolled out an annual campaign (Just Ask) to promote public awareness and understanding of clinical trials and associated issues. Just Ask 2023 is support through unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.KEYWORDS#cancertrials #clinicaltrials #regulatory #biometrics #statistics #oncology #radiotherapy

Cancer Trials Ireland is made up of a network of people who are really driven by one thing, and that's to bring new treatments and clinical trials to patientsToday we meet two important members of Cancer Trials Ireland who have travelled the world in their learning and research and are now applying that knowledge at home.We hear what triggered their interest in research and trials and what unique offerings Ireland has for fellow experts in the field.Our guests are Professor Gerry Hanna recently joined as Vice Clinical Lead in Cancer Trials Ireland and is Chair of Clinical Oncology at Trinity College. Professor Michaela Higgins is a Consultant Medical Oncologist at St. Vincent’s University Hospital, Dublin and a Clinical Professor at University College Dublin (UCD). THINGS WE SPOKE ABOUT●       The impact of trials on enhancing clinical services●       Learning from mentors in various fields●       Benefits of travelling for learning and research●       Readjusting to life in Ireland with higher patient numbers and demands●       Ireland’s unique selling point for researchers and cliniciansGUEST DETAILSProfessor Michaela Higgins is a Consultant Medical Oncologist at St. Vincent’s University Hospital, Dublin and a Clinical Professor at University College Dublin (UCD). https://www.ucd.ie/cancertrials/about/whoweare/professormichaelahiggins/Professor Gerry Hanna is the Marie Curie Chair of Clinical Oncology at Trinity College Dublin and a Consultant in Radiation Oncology at the St Lukes Radiation Oncology Network and at the Trinity St James Cancer Institute. Gerry also holds honorary appointments at the Peter MacCallum Cancer Centre, Melbourne, the University of Melbourne and Queen’s University Belfast.https://www.stjames.ie/consultants/hannagerry/MORE INFORMATIONCancer Trials Ireland is a registered charity and the leading cancer research trials organisation in Ireland. It aims to provide every patient with cancer access to high-quality and potentially life-altering cancer trials and to make Ireland a highly attractive location to open cancer trials.Since 2000, 623 cancer trials have opened in Ireland, with more than 33,500 patients taking part. In 2022, a survey of public attitudes revealed three in five people in Ireland would take part in a clinical trial. Almost all cancer clinical trials available in Ireland are listed on the Cancer Trials Ireland website: www.cancertrials.ie/open-trials.Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society. It also receives income from pharmaceutical companies and international research groups, as well as through philanthropic giving and donations from members of the public.Since 2017, Cancer Trials Ireland has rolled out an annual campaign (Just Ask) to promote public awareness and understanding of clinical trials and associated issues. Just Ask 2023 is support through unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.KEYWORDS#cancertrials #clinicaltrials #cancerresearch #oncology #patient #fellowship #leadership

As the Irish general election approaches, a community of patients, advocates, researchers and experts are campaigning for better care for cancer patients. From patient support to finances and wellbeing, Irish patients deserve the same availability of care as any other country in Europe, including access to life-changing clinical trials. We also hear the positive stories of those who’ve been able to access trials and about incredible patient-led initiatives that are improving quality of life for those facing this illness.Our guest, Averil Power, has been a voice for those affected by cancer previously as a politician and now as CEO of the Irish Cancer Society. THINGS WE SPOKE ABOUT●       Challenges and Priorities for the Upcoming General Election●       Importance of Cancer Trials and Advocacy Efforts●       Patient-Led Research and Personal Stories●       Overcoming issues within the health system such as time and GDPR●       Renewed focus and determination to drive improvements in cancer care and supportGUEST DETAILSAveril Power has been Chief Executive of the Irish Cancer Society since January 2018. She has over fifteen years’ leadership, policymaking and campaigns experience, having served as CEO of the Asthma Society of Ireland, an elected member of Seanad Éireann and a policy adviser in several Government departments.Averil holds a Degree in Business, including non-profit management, from Trinity College Dublin and was President of Trinity Students’ Union from 2001 to 2002. She also has a Diploma in Law from the Kings Inns.https://www.cancer.ie/about-us/about-the-irish-cancer-society/who-we-are/our-leadership MORE INFORMATIONCancer Trials Ireland is a registered charity and the leading cancer research trials organisation in Ireland. It aims to provide every patient with cancer access to high-quality and potentially life-altering cancer trials and to make Ireland a highly attractive location to open cancer trials.Since 2000, 623 cancer trials have opened in Ireland, with more than 33,500 patients taking part. In 2022, a survey of public attitudes revealed three in five people in Ireland would take part in a clinical trial. Almost all cancer clinical trials available in Ireland are listed on the Cancer Trials Ireland website: www.cancertrials.ie/open-trials.Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society. It also receives income from pharmaceutical companies and international research groups, as well as through philanthropic giving and donations from members of the public.Since 2017, Cancer Trials Ireland has rolled out an annual campaign (Just Ask) to promote public awareness and understanding of clinical trials and associated issues. Just Ask 2023 is support through unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.KEYWORDS#cancertrials #IrishCancerSociety #clinicaltrials #patientadvocacy #funding #cancerresearch

Although the NCI-MATCH precision medicine cancer trial has now wrapped up, we are still learning a lot from this enormous initiative.Today we hear from co-chair of NCI-MATCH about the results, what it has taught us about genomics and what it means for the future of cancer treatment.Our guest is Peter J. O’Dwyer, MD, a GI medical oncologist, Group Co-Chair of the ECOG-ACRIN Cancer Research Group, and professor of medicine at the University of Pennsylvania. Within ECOG-ACRIN, he co-chairs the landmark NCI-MATCH precision medicine cancer trial, and is the CEO and Chair of PrECOG. THINGS WE SPOKE ABOUT●       An introduction to Peter O’Dwyer●       How clinical trials have changed over time●       The evolving area of genomic tests●       Why Next Generation Sequencing should be considered●       A Summary of the NCI-MATCH Trial●       How to improve activity●       Corporate approved settings could be optimal setting for studies●       Advice for clinicians on Next Generation Sequencing●       Improvements in treatment for pancreatic cancerGUEST DETAILSPeter J. O’Dwyer, MD, is a GI medical oncologist, Group Co-Chair of the ECOG-ACRIN Cancer Research Group, and professor of medicine at the University of Pennsylvania. Within ECOG-ACRIN, he co-chairs the landmark NCI-MATCH precision medicine cancer trial. He is also the CEO of PrECOG, which develops and leads cancer clinical trials in partnership with industry.Dr. O’Dwyer received his medical degree at the University of Dublin, Trinity College. Dr. O’Dwyer has published over 350 scientific papers, and participates in numerous national and international organisations.https://ecog-acrin.org/about-us/governance/peter-odwyer/MORE INFORMATIONCancer Trials Ireland is a registered charity and the leading cancer research trials organisation in Ireland. It aims to provide every patient with cancer access to high-quality and potentially life-altering cancer trials and to make Ireland a highly attractive location to open cancer trials.Since 2000, 623 cancer trials have opened in Ireland, with more than 33,500 patients taking part. In 2022, a survey of public attitudes revealed three in five people in Ireland would take part in a clinical trial. Almost all cancer clinical trials available in Ireland are listed on the Cancer Trials Ireland website: www.cancertrials.ie/open-trials.Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society. It also receives income from pharmaceutical companies and international research groups, as well as through philanthropic giving and donations from members of the public.Since 2017, Cancer Trials Ireland has rolled out an annual campaign (Just Ask) to promote public awareness and understanding of clinical trials and associated issues. Just Ask 2023 is support through unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.KEYWORDS#clinicaltrials, #cancerireland #tumors #genomic #immunotherapy #pancreatic cancer

Our guests today include Dr Dearbhaile Collins, Tanya Knott and Claire Bermingham. DearbhaileColllins is a medical oncologist, and also the Clinical Lead for the Cancer Trials Ireland MolecularTumour Board.Tanya Knott represents patients on the Molecular Tumour Board steering committee. She’s also aDirector of the SJK Foundation, which was founded in honour of Tanya’s sister Sarah Jennifer Knott,who died of CUP, Cancer of Unknown Primary, aged 31.Our last guest is Claire Bermingham, who co-ordinates the Molecular Tumour Board in Cancer TrialsIreland.THINGS WE SPOKE ABOUTHow the MTB works and success with patientsNext Generation SequencingThe cost of going privateSarah Jennifer Knotts story and the work of the foundationHow doctors can have MTB review casesMORE INFORMATIONhttps://sjkfoundation.org/about-us/https://www.cancertrials.ie/molecular-tumor-board/

In this episode we focus on pancreatic cancer, what it is, why it is so hard to treat and about some of the amazing research being conducted into fighting it.Our guests are Dr Grainne O’Kane from St James Hospital and Frances Crowley who has been a huge influence on cancer fund-raising in memory of her late husband jockey Pat Smullen.THINGS WE SPOKE ABOUT·        Why pancreatic cancer is so difficult·        Frances shares the story of her late husband Pat·        How she became a patient advocate·        The incredible amounts she has been able to raise with the racing community·        Where we stand today with pancreatic cancer trials·        Frances reveals a big announcement·        The importance of patient partnership in public/private research·        What is nextMORE INFORMATIONhttps://www.cancertrials.ie/pat-smullen/Cancer Trials Ireland is a registered charity and the leading cancer research trials organisation in Ireland. It aims to provide every patient with cancer access to high-quality and potentially life-altering cancer trials and to make Ireland a highly attractive location to open cancer trials.Since 2000, 623 cancer trials have opened in Ireland, with more than 33,500 patients taking part. In 2022, a survey of public attitudes revealed three in five people in Ireland would take part in a clinical trial. Almost all cancer clinical trials available in Ireland are listed on the Cancer Trials Ireland website: www.cancertrials.ie/open-trials.Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society. It also receives income from pharmaceutical companies and international research groups, as well as through philanthropic giving and donations from members of the public.Since 2017, Cancer Trials Ireland has rolled out an annual campaign (Just Ask) to promote public awareness and understanding of clinical trials and associated issues. Just Ask 2023 is support through an unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.

Eibhlín Mulroe talks to Prof Sean Dinneen, a Consultant Endocrinologist based in Galway & NUIG. They discuss Public & Patient Involvement. “(Patients) have been co-researchers, and co-investigators,” says Prof Dinneen. “They have been a huge part of what we have achieved over the years, and we have completed and published a pilot of a random control trial of that intervention... Recognising early on that we (healthcare professionals) were not going to crack this on our own is how I got involved in PPI and it has been one of the most rewarding things I have done.”