EUROPEAN CYSTIC FIBROSIS SOCIETY (ECFS)
 

European CF Registry

Patient Criteria to be collected

Variables per April 1st 2008, (for details please see definition paper). 
An excel spreadsheet with the data fields can be obtained from hvo@dadlnet.dk

Basic data

• country

• Centre number

• Month and year of birth (mm/yyyy)

• Gender

• Genotype 1

• Genotype 2

• Did the patient die during this year (date of death)

Diagnosis

• Age at diagnosis (month decimals)

• Sweat chloride Meq/L [highest test], positive, not, type of test, date of test

Mode of presentation

• Meconium ileus

• Neonatal screening

Current report

• Height (cm) [last test ] of year

• Height (z-score) [last test]

• Weight (kg) [last test]

• Weight (z-score) [last test]

• BMI (z-score) [last test]

• FEV-1 liter [best test (using % of predicted according to local reference values]

• FVC liter [at best FEV-1 test]

• date of best FEV-1

• height at date of best FEV-1

Bacteriology

• Chronic Pseudomonas aeruginosa [see definitions paper]

Complications

• lung transplantation

• liver transplantation