Patient Voice In Cancer Research workshop with the National Cancer Registry: Report published, changes made!

What is the National Cancer Registry(NCRI)? What does it do with the data it collects? At a recent workshop hosted by Patient Voice In Cancer Research and the Irish Cancer Society, in UCD, EDI along with many others affected by cancer had their say. The workshop found that there was little awareness of the NCRI and how it handles data. It also found there was a desire to be involved in in the research process. NCRI has looked at the workshop results and taken steps to improve engagement. For example, it has organised a further public meeting in Cork (October 8th 2019) and undertaken to make its website more accessible. It wants to establish a patient panel to continue the process of engaging patients in issues such as research design. You can read the full report here

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