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List of patient variables to be collected for Registry including definitions
Updated 30 June 2010
The ECFR collects demographic and clinical data on all CF patients meeting the ECFR criteria. For a detailed list of variables, their definition and the inclusion criteria, please click here (pdf). The summary of the information collected is given hereunder.
Demographic
Follow Up
CF Centre's code
Date of best FEV1 registered this year
Patient's code
Value of best FEV1 registered this year
Year of follow up
Value of best FVC registered this year
Date of Birth
Height measured at date of best FEV1
Gender
Weight measured at date of best FEV1
Status of Patient
Cause of Death
Complications
Date of Death
Allergic broncho-pulmonary aspergillosis this year
Diabetes: daily insulin treated this year
Gentotype
Pneumotheroax requiring chest drain this year
First Mutation
Liver disease this year
Second Mutation
Hemoptysis this year
Pancreatic status: faecal elastase ever
Therapy
Pancreatic status: faecal fat ever
Inhaled continuous hypertonic NaCI this year
Occurrence of malignancy: ever in the patient's life
Inhaled continuous antibiotic this year
Inhaled continuous bronchodilators this year
In Ocygen therapy this year
Microbiology
Use of rhDNase this year
Chronic Burkholderia cepacia complex
Use of continuous Azithromycin this year
Nontuberculous mycobacteria this year
Use of ursodeoxycholic acid this year
Chronic Pseudomonas aeruginosa
Use of pancreatic enzymes this year
Chronic Staphylococcus aureus
Stenotrophomonas maltophilia this year
Diagnosis
Diagnosis confirmed
Transplant
Age at diagnosis
Last liver transplant
Sweat test
Year of last liver transplant
Electrolytes
Last lung transplant
Chloride value
Year of last lung transplant
Meconium Ileus at birth
Neonatal screening
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