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UK Cystic Fibrosis Database

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Audit & Research

Audit | Research

Longitudinal information is gathered for each patient and this can be used to track the progress of each patient for key outcomes such as growth and lung function, treatment, bacteriology, complications etc. In addition, the Database model facilitates the twin objectives of audit and research.

Audit

Biographical audits:
Age profile
Age at Diagnosis
Presenting Features
Genotype

Clinic Visit audits:
Body Mass Index
Height
Weight
FEV1
FVC
Exercise Tolerance
Bacterial Lung Infection
Hospital Admission
DNase

Annual Review audits:
Occupation
Nebulised Antibiotics
Organisms Cultured
Supplemental Feeding
Days off School/Work
Days in Hospital
Number of Clinic Visits p.a.
Shwachman Scores
Complications – Chest, Gut etc
Northern Score
Oral Antibiotics
Glucose tolerance

 


1. Children under 16
1.1 Percentage of children <10th weight centile, by Centre
1.2 Percentage of children <10th height centile, by Centre

2. Adults 16 years and over
2.1 Percentage of adults <10th weight centile, by Centre
2.2 Percentage of adults <10th height centile, by Centre

3. Patients under 40% predicted FEV1
3.1 Percentage of children with FEV1% < 40
3.2 Percentage of adults with FEV1% < 40

4. Patients under 40% predicted FVC
4.1 Percentage of children with FVC% < 40
4.2 Percentage of adults with FVC% < 40

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Research

With over 80% of known outcomes that are linked to survival in CF collected by the Database, 95% of UK patients registered and all Regional CF Centres participating in the project, the UK CF Database is well placed to provide data for research into cystic fibrosis. There is a simple procedure for researchers wishing to conduct such research by applying to the Steering Committee for information.

The Database has already provided insight into complications of CF that would be very dificult to achieve by any other means. Particular examples include the selectively worse outcomes for females who develop CF related diabetes, factors related to fertility and the monitoring of drug doses as specified by the Committee on Safety of Medicines. At the social end of the CF spectrum, the UK CF Database has already proved its utility in informing the Government about the potential benefits from genetic screening for CF at birth and the data therein formed part of the submission for the Scottish Neonatal Screening Programme in 2003. The data were utilised to make the case for screening all infants at birth. For a comprehensive list of research output, please see the Publications section.

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Created and Maintained by: N. Mehta

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Page Last Updated: 2 April 2010

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