The PVCR aim to actively engage cancer patients, cancer researchers and other interested parties (patient advocates, families, carers, healthcare professionals, policy-makers and those with an interest in cancer research), in discussions and decision-making processes, which positively impact on cancer research and outcomes for patients.
We have partnered with organisations nationally and internationally as well as with individual cancer researchers and groups located in institutions from across the island of Ireland.
Are you interested in partnering with PVCR in an event that would benefit patients directly and contribute to the growth of this initiative? Contact us: email@example.com.
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National Cancer Registry Ireland
National Cancer Registry Ireland is State Agency based in Cork and funded by the Department of Health. It was established in 1991 to collect information about patterns and trends in cancer in Ireland. To do this they record all new cases of cancer and primary treatment by working in partnership with all public and private Irish hospitals. This work helps to plan and evaluate cancer policies and services and facilitates research. The NCRI also contribute to international cancer survival research to monitor how Irish cancer outcomes compare to other countries. An important aspect of the work of the NCRI’s work is that they aim to capture every single cancer patient so that they can monitor how the health system works for everyone.
Read reports from NCRI/PVCR workshop (April 2019)
Towards Routinely Capturing the Cancer Patient Experience. A consultation with Patient Voice in Cancer Research Policy Response National Cancer Registry Ireland. (2nd July 2019)
A Report on Findings from the National Cancer Registry and Patient Voice in Cancer Research Workshop.National Cancer Registry Ireland. (2nd July 2019)
National Biobanking Working group
The National Biobanking Working Group (NBWG) is a group of people working in the field of health research who are passionate about improving biobanking in Ireland. Biobanking is the collection and use of human samples, such as blood or tissue samples, and healthcare data used for health research. Facilitated by Clinical Research Development Ireland, the NBWG was formed in January 2019 to address concerns nationally that researchers had in terms of consent and the use of patients samples and data specifically for research purposes.
Read the report from NBWG/PVCR workshop (October 2019)
National Cancer Research Institute (NCRI UK)
The National Cancer Research Institute is a UK-wide partnership of research funders, working together to maximise the value and benefits of cancer research for patients and the public. We capitalise on opportunities and address challenges in research to improve the lives of people affected by cancer. A key strength of the NCRI is our broad membership, with representation across charity and Government funders as well as all four nations in the United Kingdom. NCRI involves patients, carers and others affected by cancer (also known as ‘consumers’) at all stages of its activities, including developing clinical trials and high-quality studies.
Read the report from NCRI(UK)/PVCR workshop (February 2020)
Kay McKeon, Letter Eleven Design
Cancer Resources & Services Online Hub – Developing an eHealth online porthole could help alleviate the information deficit experienced by cancer patients and survivors in Ireland.
Ann-Marie O’Neill, Thrombosis Ireland
Improving awareness of Cancer Associated Thrombosis (CAT) is a focus for this patient advocate group.
Ann-Marie O'Neill is the driving force behind Thrombosis Ireland as patient founder and acting CEO. Having survived a number of blood clotting events and understanding little about the it, Ann-Marie realised something needed to be done to raise awareness about this potentially preventable life-threatening condition.
PVCR Research Partners and Groups are listed below: