Cystic Fibrosis Registry of Ireland

Data Collection Type
National data collections of health and social care in Ireland
Organisation

Cystic Fibrosis Registry of Ireland

Year established

2001

Statement of purpose

The Cystic Fibrosis Registry of Ireland 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 (CF) 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.

Aims and objectives:

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.

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.


Planning and management:

  • to assist in the planning and management of health services and essential resources for people with CF.

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, the Cystic Fibrosis Association of Ireland, 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.
     
Coverage

Republic of Ireland — all hospitals/centres/clinics offering primary and shared care to CF patients. Voluntary participation.

Description

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.

Data content

Name and address, date of birth, HSE area, ethnicity, name of consultant and family doctor, diagnostic tests, genotype, symptoms/method of diagnosis, age at diagnosis, number of hospitalisations between annual assessments, complications, pulmonary function tests, chest X-ray reports, clinical chemistry, long-term therapies, vaccinations/ immunisations, infections, cultures and treatments, nutritional summary, physiotherapy summary, transplant status, social details such as number of days off work or school in previous 12 months.

Data providers

Irish hospitals that provide care to cystic fibrosis (CF) patients.

Data collection methodology

Participation is voluntary; enrolment is based on patient consent to have their medical record details added to the registry. Data is taken from patient medical charts by registry staff and input takes place on a secure Internet-based computer system.

Data dictionary

Not available.

Clinical coding scheme

N/A

Size of national collection

Approximately 1,200 records created for most living registry participants on average annually.

Publication frequency
Accessing data

Annual Report. CF consultant/team access to own patient data via secure Internet access. Researcher access to anonymised data via a management approval process. Data application forms are available on request from  +353 1 7163177

Open data portal access

No.

Telephone contact
Other comments

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. Data dictionary available on request.