A new report published by the FutureNeuro SFI Research Centre for Chronic and Rare Neurological Diseases, and RCSI University of Medicine and Health Sciences, highlights the priorities and needs of patients affected by neurological disease, as well as clinicians and researchers, to inform the implementation of the HSE’s National Strategy for Accelerating Genetic and Genomic Medicine in Ireland. The report captures dialogue from a multi-stakeholder consultation led by the SFI FutureNeuro Centre and RCSI University of Medicine and Health Sciences PPI Ignite Network in partnership with IPPOSI (Irish Platform for Patient Organisations, Science and Industry).

There are over 800,000 people in Ireland living with a neurological condition, which presents a significant impact on health and quality of life. The ‘Deliberative Dialogue on Genomics in Neurological Healthcare and Research’ report sets out recommendations aimed at ensuring the upcoming implementation of the Irish national genetic and genomic service incorporates the perspective of people living with a neurological condition, families, clinical and research stakeholders.

Nuala Ryan, FutureNeuro PPI Panel member, said: “The Deliberative Dialogue process provides a forum to ensure genuine collaboration across all groups from policy makers, patient advocates, the Health Service Executive (HSE) and research community to help shape the implementation of genomic medicine in our health service towards the needs of our citizens – this will include helping to improve diagnosis, provide better treatments and potentially allow preventative actions to take place.”

Key recommendations of the report include:

  • Building consultative, collaborative engagement between the National Genetics and Genomics Office and the neurological community.
  • Ensuring equity of access for all people living with a neurological condition to an appropriately resourced national genomics service.
  • Developing secure data infrastructure to enable timely diagnosis.
  • Improving research ethics processes to facilitate impactful research.
  • Raising awareness of the value of genomics to healthcare through targeted education and public awareness campaigns.

Professor Gianpiero Cavalleri, Deputy Director of the FutureNeuro SFI Research Centre and Professor of Human Genetics, School of Pharmacy and Biomolecular Sciences, RCSI, commented on the launch of the report: “Everything we understand about genetics in healthcare has emerged from discoveries made through research. Dialogues like this help build effective partnerships for translating research to the clinic, to the benefit of everyone impacted by neurological or other genetic conditions.”  

Commenting on the report, Deirdre McNamara, Director of Strategic Programmes, Office of the Chief Clinical Officer, Health Service Executive (HSE) said: “The implementation of the National Strategy for Genetics and Genomics is a priority throughout the HSE and we are committed to improving the delivery of healthcare for people in Ireland. The HSE will continue to ensure that the patient voice is at the centre of the process throughout its implementation and welcome the recommendations captured in this report from key stakeholder groups in the neurological community.”

The Deliberative Dialogue event and report were funded by the FutureNeuro SFI Research Centre and RCSI PPI Ignite (via the Health Research Board and the Irish Research Council).