CF Registry of Ireland Turning Data into Information
T
he Cystic Fibrosis Registry of Ireland (CFRI) was established in 2002. A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition.
The role of the CF Registry is to collect and record information on the health status of people with cystic fibrosis (CF) who agree to participate. By collecting and analysing information on all people with CF in Ireland, the Registry can better understand their health and wellbeing, and the treatments they receive. Information collected allows the CFRI to; • Identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed people with cystic fibrosis • Provide data on long-term prognosis for CF patients in Ireland and compare this with international data • 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 • Compare CF management and treatment within Ireland and with best international practice standards • Initiate research into the causes, distribution, treatment and outcome of PWCF, and to participate in similar research initiated by others; and to publish the findings • Assist in the evaluation of novel treatments and screening programmes • Assist in the planning and management of health services and essential resources for PWCF Approved researchers use the registry to study cystic fibrosis treatments and outcomes. The information is also used to: • Provide information to the public on the number of people with CF in Ireland and their health status • 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.
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Spectrum / Summer 2021
