Rare diseases are characterised by their relatively low prevalence (less than 1 in 2,000 people in the EU). To have a rare disease is to have a condition that often goes undiagnosed for years. Doctors may never have seen the condition before and hospital diagnostic services may struggle to find the rare disease presented by […]
Our most recent reports, guides, templates, etc, from all our areas of activity.
Do patients and the public trust researchers with their health data? In 2019 we held a small workshop with patients and members of the public to capture their views on how they wish their data to be treated, for the purposes of health research. Download our pdf to see the results of our findings. Do […]
Click below to download a pdf of the document: Supporting PPI in industry-led research_Guidance for Charities_CRIG and HRCI Supporting patient and public involvement in industry-led research: guidance for charities Click the image to download the pdf or read in your browser.
Our Latest Report, and the first under the banner of the Health Research Charities Ireland. Click to view it on screen or download it.
September 2018 Patient registries are broadly recognised as a critical underpinning for improving healthcare through research. As an umbrella organisation for many medical research charities intimately involved in this pursuit, registries are a reoccurring theme. Despite their importance however, in too many cases, registries remain a thing of the future. The challenges to developing registries […]
September 2018 It is an exciting time in health research. Barriers between the research community and the public are being eroded, we are taking a broader view of what constitutes expertise and research is now more likely than ever to result in impact for the people it is intended to help. Patient and public involvement […]