BackgroundTypes of Information
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
