A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition. CFRI have collected and recorded information on the health status of people with cystic fibrosis (CF) who agree to participate in the registry since 2002. Approved researchers use the registry to study cystic fibrosis treatments and outcomes.
By collecting and analysing information on all people with CF in Ireland, we can better understand their health and wellbeing, and the treatments they receive. CFRI’s aims are to:
- provide information to the public on the number of people with CF in Ireland and their health status
- collect and analyse health information to help assess and plan health services for people with CF
- monitor the safety and effectiveness of CF treatments
- compare the health of people with CF in Ireland to the health of those in other countries
- produce publicly available reports each year that summarise registry information on the health status of people with CF in Ireland
- provide a CF information service to governmental agencies, health boards, hospitals, health care professionals, approved researchers and patient advocacy organisations
- contribute to CF research at home and abroad
CFRI also provide consultation services on patient registry development, governance and operation, registry research project management and statistical analysis services to researchers, research bodies and patient organisations.