Cystic Fibrosis Registry of Ireland
Cystic Fibrosis Registry of Ireland.
2001
The Cystic Fibrosis Registry of Ireland (CFRI) was established 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 CF.
In-scope & out of scope - we collect and analyse information related to CF encounters from the following HSE-recognised CF centres only and not from any other hospital within Ireland. We collect data from:
- The HSE-designated CF specialist centres: Beaumont Hospital, St Vincent’s University Hospital, CHI (Children’s Health Ireland) group (including National Children's Hospital, Tallaght, Our Lady's Children's Hospital, Crumlin, Temple Street Children's University Hospital), University Hospital Galway, Cork University Hospital and University Hospital Limerick
- Five CF clinics (Cavan General Hospital, Mayo University Hospital, Our Lady of Lourdes Hospital, Drogheda, Sligo University Hospital, and University Hospital Waterford)
- The Irish National Lung Transplant Programme at the Mater Misericordiae University Hospital Dublin.
Our aims and objectives relate to the following areas of work:
1. Registry Process
- To identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed people with CF in the Republic of Ireland
- To register all persons with CF whose usual residence is in the Republic of Ireland
- To provide data on the long-term prognosis for people with CF in the Republic of Ireland and to compare this information with international data
- To compare CF management and treatment in Ireland with best international practices
- 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.
2. 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 people with CF, 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.
3. Healthcare Planning and Management:
- To assist in the planning and management of health services and essential resources for people with CF.
4. Reporting:
- To publish an annual report based upon the activities of the Registry
- To furnish information and assistance in relation to any aspect of CF to the HSE, CF Ireland, and other service providers, and people with CF
- To provide specially requested de-identified reports for clinicians, the HSE, and hospitals.
To provide individual consultants with trends and updated information in respect of their patient population. Ethical approval has been received from all hospitals that participate in the Cystic Fibrosis Registry of Ireland. Written patient consent has been received by all patients participating in the registry.
Geographic - national coverage throughout Republic of Ireland - all hospitals/centres/clinics offering primary and shared care to CF patients are included (as noted above). Participation in the registry is voluntary.
Temporal – CFRI commenced data collection in 2002 and data collection is ongoing.
The Cystic Fibrosis Registry of Ireland collects and
analyses information relating to CF in order to improve the quality of care for all of the people with CF in the Republic of Ireland and to keep relevant medical records of each patient with CF in a central computer system.
Clinical teams,
researchers,
policy makers
(e.g., EMA), and HSE.
Patient data is collected according to the following categories:
1. Patient demographics –name and address, date of birth, HSE area, ethnicity, date of consent
2. Core medical care information – centres of care (including primary hospital), medical record number, IHI number, name of consultant, diagnostic data on when & how CF was diagnosed
3. Encounter data on type & date of encounter e.g., annual review, CF clinic, study visit etc.
4. Clinical data relating to diagnostic tests, genotype, symptoms/method of diagnosis, age at diagnosis, CF history, number of hospitalisations between annual assessments, complications, pulmonary function tests, chest X-ray reports, clinical chemistry, long term therapies, infections, cultures and treatments, nutritional summary, physiotherapy summary and exercise/activity data, transplant status, and pregnancy status.
5. Data on clinical trial participation
Data dictionary available on request.
There is no national unique identifier. CFRI collects hospital level medical record number (MRN) and provision has been made to collect a unique national health identifier when that is made available. CFRI allocates each consented CF patient with a unique registry ID. At a CF centre level CFRI collects day month and year of birth, full date of birth of CF patients that have given explicit consent.
The CFRI data set collects data relating to sex, country of birth, ethnicity and address.
Enrolment in the registry is subject to a process of gaining informed consent from patients diagnosed with CF/their parents or carer (if under 18). Participation is voluntary.
Data is collected from patient medical charts and input into a secure internet-based computer database. Data collection is undertaken by CFRI data collectors.
Data is collected on a continual basis throughout the year and CFRI data collectors collect data on an encounter basis.
N/A.
Covering approximately 1,560* records created for mostly living registry participants annually.
*based on 2020 annual report data
Annually via our annual reports: https://cfri.ie/annual-reports/
Summary data is published in the Annual Report. CF consultant/team can request read only access to their centre’s patient data. Researchers can request access to de-identified data by submitting a CFRI Data Application Form: https://cfri.ie/apply-for-data/
Each application is reviewed by the CFRI Scientific Committee and must be approved prior to the release of any data.
Please direct any emails to: info@cfri.ie
No.
The registry is accessible to permitted users only through secure internet access.
Founded in 2001; database finalised and first patient entered onto system in 2002.