Save the Date 16th November 2023 HRCI is delighted to welcome attendees to this in-person Irish Health Research Forum event. Biobanks are a backbone in the advancement of medicine through scientific discovery. Research on human tissue samples, including blood, skin, DNA etc., along with the associated patient information, allows us to better understand and […]
Patient registries play a crucial role in enhancing healthcare and health outcomes, serving as vital foundations for developing and maintaining research networks and projects. A steadily increasing appreciation of their importance in the broader health data landscape, along with advancements in technological solutions, is leading more groups to embark on developing a registry. While there […]
Guidance for charities, other civil society organisations, researchers, research institutions and funders, to achieve successful research partnerships. This publication delves into the immense value that arises when charities and researchers partner to achieve societal benefit from research. The amalgamation of their distinct expertise and wisdom holds the potential to improve lives. However, despite the promise, […]
Rosaline Callaghan; Person with lived experience of rare disease and Rare Disease Forum Steering Group member Rosaline Callaghan is 63, a retired barrister, and living with Hereditary Amyloidosis Thr60Ala. It’s a progressive and ultimately fatal condition in the absence of treatments and until a few years ago, there were none. Rosaline is the first in her […]
Patient Partner with The Centre for Arthritis Research in UCD (UCDCAR ) and the European League Against Rheumatism (EULAR)Stacey Grealis is a Patient Partner with The Centre for Arthritis Research in UCD (UCDCAR ) and the European League Against Rheumatism (EULAR). She is an IPPOSI patient education programme graduate and member of the EUPATI National […]
Sandra Collins; Person with lived experience of rare disease and Rare Disease Forum Steering Group memberSandra Collins is someone who lives with a Rare Disease known as Von Hippell Lindau (VHL). VHL is a rare, genetic, chronic cancer disorder which in its simplest form causes tumours within a multisystem involvement. Sandra holds a BA in sports […]
Lorna Kerin; Manager at the Public and Patient Involvement (PPI) Research Unit in the University of LimerickLorna Kerin is currently Manager at the Public and Patient Involvement (PPI) Research Unit in the University of Limerick Lorna was previously Manager of Public Patient Involvement in Research at RCSI University of Medical and Healthcare Sciences where she […]
Patient and Public Involvement in Rare Disease Research Online Event – 18.30pm, Wednesday, June 14th 2023 HRCI were very pleased to host a Rare Disease Forum event, centred around the topic of public and patient involvement (PPI) in research on June 14th. This event aimed to shift the paradigm from rare disease research conducted “to,” […]
You can read the full report here The topic of research impact, or more specifically in the context of this event, societal benefit from research, has had limited focus in Ireland to date. This event was very useful in facilitating the diverse audience to find a shared language and to collectively consider what changes would […]
May 2023 HRCI is delighted to welcome attendees to this in-person Irish Health Research Forum event. There are many good people working hard to ensure that the highest standards in research ethics are maintained in Ireland. This is often done under difficult circumstances and many contribute in a purely voluntary capacity. Despite the huge […]
