Cerebral palsy (CP) describes a group of disorders affecting movement and posture and resulting in difficulty performing activities such as walking. These disorders are attributed to a change in the brain that occurs before, during or soon after birth. Over the past 50 years, data about the number and profile of infants who are diagnosed with CP have been collected in population-based registers internationally. These registers have advanced our understanding about how many people develop CP and what causes CP. Although there were previously regional CP registers in Ireland, these no longer exist. Without population level data, we do not know how many infants are diagnosed with CP in Ireland every year or the effect of public health, maternal and perinatal care on trends in CP in Ireland.
This event will bring together stakeholders to learn from national and international experiences of CP Registers, which will inform the development of a CP Register in Ireland. Stakeholders include people with CP, families, service provider organisations, professional bodies, National Clinical Programmes and Disability Persons’ Organisations.
The programme includes speakers from the Surveillance of CP in Europe (SCPE) network, the Northern Ireland CP Register, and the former Eastern Region CP Register to share learnings from implementing CP registers over the past 50 years. It also includes speakers from recently developed registers in Europe that combine registers with ongoing surveillance programmes to monitor trends in CP and improve access to multi-disciplinary preventive care.
This event will strengthen the network of stakeholders with an interest in developing an Irish CP Register, and thus improve the likelihood of successfully implementing a national register. A reflective case summary and Plain Language Summary of the event will be published and shared with service provider organisations, families and people with CP through a website and social media channels.