Dec 16 2024 50 mins 1
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 ABOUT
- Overview of Delays in Clinical Trials in Ireland
- The Role of GDPR in Clinical Trial Delays
- Patient Perspectives on Data Sharing in Clinical Trials
- The Need for Change in GDPR Interpretation
- Challenges in Bringing Trials to Ireland
- Metrics and Ireland's Standing in Europe
GUEST DETAILS
Patrick 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 INFORMATION
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 unrestricted grants from AbbVie, Bayer, MSD, Novartis, & Pfizer.
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