New report from FutureNeuro and RCSI makes recommendations for roll out of national strategy for genetics

Monday, 17 April 2023: A report published today 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 launched today 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 SFI FutureNeuro 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 SFI FutureNeuro Centre and RCSI PPI Ignite (via the Health Research Board and the Irish Research Council). 

ENDS 

For further information:  

Laura Anderson, Communications Officer, RCSI 

087 199 0399/ [email protected]  

About RCSI University of Medicine and Health Sciences 

RCSI University of Medicine and Health Sciences is a world-leading university for Good Health and Well-being. Ranked in the world top 50 for its contribution to UN Sustainable Development Goal 3 in the Times Higher Education Impact Rankings 2022, it is exclusively focused on education and research to drive improvements in human health worldwide. 

RCSI is an international not-for-profit university, headquartered in Dublin. It is among the top 250 universities worldwide in the World University Rankings (2023). RCSI has been awarded Athena Swan Bronze accreditation for positive gender practice in higher education. 

Visit the RCSI MyHealth Expert Directory to find the details of our experts across a range of healthcare issues and concerns. Recognising their responsibility to share their knowledge and discoveries to empower people with information that leads them to better health, these clinicians and researchers are willing to engage with the media in their area of expertise. 

Additional notes for editors:  

RCSI University of Medicine and Health Sciences is a funded lead site for Public Patient Involvement in Ireland as part of the HRB/IRC funded national PPI Ignite Network. See www.ppinetwork.ie. This launch has been co-funded by RCSI PPI Ignite and SFI FutureNeuro Research Centre. The Health Research Board (HRB) supports excellent research that improves people’s health, patient care and health service delivery. They aim to ensure that new knowledge is created and then used in policy and practice. In doing so, we support health system innovation and create new enterprise opportunities. 

FutureNeuro is the SFI Centre Chronic and Rare Neurological Diseases led by RCSI Professor David Henshall (Director) and RCSI Professor Gianpiero Cavalleri (Deputy -Director) www.futureneurocentre.ie. In partnership with the national clinical network for neurology, the centre contributes to improving the health and health-care of people with neurological disease. FutureNeuro’s unique approach is to explore multiple related aspects of brain disease across the themes of diagnostics, therapeutics and eHealth. 

The members of the Expert Advisory Board for the Deliberative Dialogue were as follows: 

• Prof Gianpiero Cavalleri, Deputy Director FutureNeuro/Prof Human Genetics, RCSI  

• Prof Norman Delanty, Consultant Neurologist, Beaumont Hospital/FutureNeuro 

• Ms Bridget Doyle, Business Development Manager,FutureNeuro 

• Dr Laura Brady, BESTS Programme Manager, RCSI 

• Mr Gary Boyle, FutureNeuro PPI Advisory Panel member 

• Ms Mags Rogers, CEO Neurological Alliance of Ireland (NAI) 

• Dr Derick Mitchell, CEO IPPOSI  

• Dr Avril Kennan, CEO Health Research Charities Ireland 

• Dr Mark Bale, Independent Consultant in Genomics, Policy and Bioethics  

• Prof Sally Ann Lynch, Consultant Geneticist at Our Lady’s Children’s Hospital Crumlin 

• Ms Lorna Kerin, (ex) Manager Public Patient Involvement (PPI) in Research, RCSI