The Past, Present and Future of Cerebral Palsy Registries in Ireland; an event to learn from national and international experiences

Cerebral palsy registries widely exist internationally with the primary purpose of systematically collecting data on people with cerebral palsy to improve clinical care, contribute to health policy and service planning, and inform public health strategies. As part of our work, we are developing the first national cerebral palsy registry in Ireland.

We held an event in December to mark the launch of this exciting new 5-year project to establish a national registry. We were delighted to welcome people from across Ireland to learn from national and international approaches to the surveillance of cerebral palsy. Kate Himmelman outlined the role and impact of the Surveillance of Cerebral Palsy in Europe network. Owen Hensey provided the history of cerebral palsy registers in Ireland. Claire Kerr and Alix Crawford spoke about the role and impact of the Northern Ireland Cerebral Palsy Register. Sandra Julsen Hollung joined us from NorCP to share insights and experiences of a combined medical quality registry and surveillance programme in Norway. Aukje Andringa joined us from the Netherlands CP Register to share the recent experience of establishing an innovative follow-up and treatment register in the Netherlands. Amanda O’Sullivan and Elaine McConkey shared an update on the implementation of hip surveillance in the Republic of Ireland as part of the Cerebral Palsy Integrated Pathway (CPIP). Finally, Marina Cronin spoke to the role of the National Office of Clinical Audit in developing and implementing national audits and registries in Ireland.

Since the event, Grace Lavelle has joined us in CP-Life Research Centre as the Registry Manager. Building on the event in December, we were delighted to host the first Irish Cerebral Palsy Registry Development Steering Committee meeting on the 10^th March 2025, in the Royal College of Surgeons in Ireland.

The role of the Irish CP Registry Development Steering Committee is to bring together multiagency stakeholders to optimise the design and development of the Registry. We invited a broad range of stakeholders to join the committee including health professionals, methodological experts and people with lived experience. While we develop the registry we will be looking for input into the design and implementation of the registry from people with cerebral palsy, families and health professionals. We will share updates and opportunities to be involved in future newsletters and on our website.

The project, to establish a cerebral palsy registry in Ireland, is part of the ELEVATE Programme of research, which is funded under the Science Foundation Ireland Strategic Partnership Programme with co-funding from the Cerebral Palsy Foundation. The ELEVATE Programme is led by UCC’s INFANT Research Centre with partners RCSI and Trinity College Dublin. The event to launch development of the registry was supported by funding from the Health Research Board’s Conference and Events Sponsorship Scheme, awarded to the CP-Life Research Centre at RCSI.