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Cystic Fibrosis Registry of Ireland

Creator:

Cystic Fibrosis Registry of Ireland

Subject Keywords: Cystic fibrosis Register
Topic: Fuel Poverty
Chronic Conditions
Rare Disease
Rare Diseases
Causes
Prevention
Management
Conditions
Fuel Poverty
Chronic Conditions
Catalogue: Data
Primary Data Sources
Type: Database
Region: Republic of Ireland
Description:

The Cystic Fibrosis Registry of Ireland (CFRI) has been in operation since 2001. The CFRI was established to keep relevant medical records of each patient with cystic fibrosis in a central computer system. All persons with CF receiving medical care at CF centres or clinics in the Republic of Ireland are eligible to have their information included on the CFRI. Over 300 clinical details are recorded each year for each person. These are transcribed into a sophisticated software package which is encrypted and restricted to a limited number of healthcare professionals who care for patients with CF. The Registry is accessible to permitted users only through the internet.

Data for each patient will be gathered on an annual basis. The primary categories of data collection are Registration, Diagnosis and Annual Assessment.

Registration Details

  • Personal details including name and address
  • Date of birth
  • HSE area
  • Ethnicity
  • Name of consultant and family doctor

Diagnosis Details

  • Diagnostic tests, e.g. Sweat Test results
  • Genotype
  • Symptoms / Method of Diagnosis
  • Age at diagnosis

Annual Assessment Details

  • Number of hospitalisations between annual assessments
  • Complications
  • Pulmonary function tests
  • Chest X-ray reports
  • Clinical Chemistry
  • Infections: cultures and treatments
  • Long term therapies
  • Vaccinations / Immunisations
  • Physiotherapy summary
  • Nutritional summary
  • Transplant status
  • Social details such as number of days off work or school in previous 12 months

Date:

01/01/2012

Rights: © Cystic Fibrosis Registry of Ireland
Suggested citation:

Cystic Fibrosis Registry of Ireland . (2012) Cystic Fibrosis Registry of Ireland [Online]. Available from: http://publichealthwell.ie/node/5322 [Accessed: 25th August 2019].

  

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