Mission Statement of the Cystic Fibrosis Registry of Ireland

"The Cystic Fibrosis Registry of Ireland will endeavour to collect and analyse information relating to cystic fibrosis in order to improve the quality of care for all of the people with cystic fibrosis in the Republic of Ireland."

Objectives & Aims

MAIN OBJECT OF THE ORGANISATION

The main object for which the Cystic Fibrosis Registry of Ireland is established is to provide for the relief of sickness, suffering and distress and to advance education by collecting and analysing information relating to cystic fibrosis which can be used to facilitate research and provide accurate reports in order to monitor and improve treatments which will contribute to the quality of care of persons with cystic fibrosis.

The subsidiary objects of the CFRI are divided into four key areas:

Registry Process

To identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed people with Cystic Fibrosis (CF) in the Republic of Ireland.
To register all Persons with Cystic Fibrosis (PWCF) whose usual residence is in the Republic of Ireland.
To provide data on long term prognosis for CF Patients in the Republic of Ireland and to compare this information with international data.
To compare CF management and treatment within Ireland and with best international practice standards.
To ensure that all information is complete, accurate, timely and confidential; in order to effectively use the data collected..
To develop and improve CF registry methodology.

Research

To promote and facilitate the use of clinical data in approved research projects.
To 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.
To assist in the evaluation of novel treatments and screening programmes.

Planning & Management

To provide a Cystic Fibrosis information service for the Dept. of Health & Children, Health Boards, hospitals and clinicians.

Reporting

To publish an annual report based on the activities of the Registry. The Annual Report will cover the incidence, prevalence and treatment of patients registered, at a sufficient level of morbidity and geographical detail to make it useful for planning and delivering services to PWCF.
The Annual Report will also contain financial statements regarding expenditure.
To furnish information and assistance in relation to any aspect of Cystic Fibrosis to the HSE, the CFAI, other service providers, and PWCF.
To provide specially requested reports for clinicians, the HSE, and hospitals. To provide individual consultants with trends and updated information in respect of their patient population.