In order to discuss the continued implementation of the National Rare Disease Plan and agree prioritization of tasks, both myself and officials of the Department of Health have met with the Rare Disease Task Force (comprising Rare Disease Ireland, Medical Research Charities Group (MRCP), The Irish Platform for Patent Organisations, Science and Industry (IPPPOSI)). Meetings took place in February, May and September of this year. Quarterly meetings with this important stakeholder will continue, to take place to ensure that their input and the voice of the patient is represented. The Department of Health also meets regularly with the HSE National Clinical Programme for Rare Diseases and the National Rare Disease Office to monitor progress.
Many rare diseases are genetic in origin and, as such, effective genetic services can have an important role to play in relation to diagnosis and possible treatment. The medical genetics service in Our Lady’s Children’s Hospital, Crumlin provides services for patients and families affected by, or at risk of, a genetic disorder. It comprises three integrated units: a clinical genetics service; a cytogenetics laboratory and a molecular genetics laboratory. Our Lady’s Children’s Hospital, Crumlin, provided additional resources last year to support the hospital’s Department of Clinical Genetics. An external multi professional team, led by an experienced NHS UK Health Manager, has been assisting in the improvement of the service. Investments in staff and equipment to further develop the service is continuing.
The Minister, and the 10-year strategy for transforming healthcare in Ireland, Sláintecare, acknowledges the fundamental importance of research in delivering high quality and informed services based on robust data and rigorous research. Clinical trials, in particular, are at the heart of improved prevention, diagnosis and treatment of diseases. International evidence clearly shows that standards of care are higher in research-active healthcare organisations, and this results in greater access to innovative treatments and improved outcomes for patients. In addition, this improves the recruitment and retention of high calibre staff into the health service and attracts industrial collaboration and jobs. For this reason, the Department of Health, via the Health Research Board, has invested over €150m in clinical research infrastructure and supports over the last decade. This has resulted in the establishment of state-of-the-art clinical research facilities on the campuses of hospitals, clinical trials networks to support the conduct of multi-centre trials, a Trials Methodology Research Network (HRB-TMRN) to support the development of methodological skills in trials and intervention research and Clinical Research Coordination Ireland (HRB-CRCI) to act as a one-stop-shop for all those interested in the conduct of multi-site clinical trials in Ireland.
As a further sign of his commitment to clinical research and his ambition to increase the trial footprint in Ireland, the Minister recently secured government approval to become a member of the European Clinical Research Infrastructure Network (ECRIN). By managing and supporting trials across borders, connecting networks, and advising and implementing policy, it advances knowledge flow, competitiveness and integration in European clinical research. As a member, Ireland’s clinical trial researchers will now have access to a wider patient base and diversity, expertise from across Europe and potential cost savings through resource sharing with other member states. Membership of ECRIN will also increase the ability of people in Ireland to be part of research on rare conditions and to benefit from breakthroughs as ECRIN represents a population of 300 million, giving access to much larger trials than could be delivered in Ireland alone.
There are currently over 330 clinical investigators in Ireland leading and undertaking trials across the clinical trials infrastructure mentioned above. To ensure that we are pro-actively and constantly developing the future cadre of clinician and non-clinician clinical research investigators, the HRB has an expansive portfolio of early-, mid- and senior career investigator awards and fellowships. The HRB has also introduced a dedicated funding stream in recent years to fund clinical trials and intervention studies.
Finally, one of the most long-standing barriers to the conduct of seamless and efficient clinical trials in Ireland is our current system of Research Ethics approval. In July this year, the Minister secured approval for a National Research Ethics Committee Bill. The establishment of a National Office for Research Ethics Committees, and the urgent establishment of a National Research Ethics Committee in the area of Clinical Trials (of Medicinal Products), will deliver an effective and coherent national model which will benefit those conducting and participating in trials.
The Minister is aware of the significant opportunities and benefits afforded by genetic and genomic research. The key objective for the Department, and the Minister, is to ensure that Ireland develops a comprehensive national policy/strategy which ensures that we both respond to these opportunities and overcome the not insignificant challenges of implementing a genomic medicine programme in a health service delivery context.
The ultimate goal is for genomic medicine to benefit individuals, the healthcare system and society. In 2016 Professor Owen Smith authored the ‘Report of the National Genetic and Genomic Medicine Network Strategy Group’. On foot of the recommendations outlined in this report, in 2018 the HSE received new service development funding to begin the process of establishing a National Genetics and Genomics Medicine Network. The aim of this Network, once established, is that it would build the effective governance arrangements that recognises the interdependence between corporate, financial and clinical governance across the service and integrate them to deliver high quality, safe and reliable healthcare. Discussions are at an advanced stage to initiate the recruitment of a National Director of this Network.