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Trial registered on ANZCTR
Registration number
ACTRN12605000734662
Ethics application status
Approved
Date submitted
12/09/2005
Date registered
11/11/2005
Date last updated
11/11/2005
Type of registration
Retrospectively registered
Titles & IDs
Public title
Genotypoing and data collection for the natural cystic fibrosis registry
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Scientific title
Genotyping and data collection for the natural cystic fibrosis registry
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Universal Trial Number (UTN)
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Trial acronym
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Linked study record
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Health condition
Health condition(s) or problem(s) studied:
Cystic fibrosis
886
0
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Condition category
Condition code
Human Genetics and Inherited Disorders
954
954
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0
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Cystic fibrosis
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Intervention/exposure
Study type
Observational
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Patient registry
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Target follow-up duration
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Target follow-up type
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Description of intervention(s) / exposure
Use of demographic data to assess effectiveness of treatments and service performance over an indefinite period
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Intervention code [1]
528
0
None
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Comparator / control treatment
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Control group
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Outcomes
Primary outcome [1]
1254
0
Survival
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Assessment method [1]
1254
0
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Timepoint [1]
1254
0
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Secondary outcome [1]
2285
0
Lung Function
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Assessment method [1]
2285
0
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Timepoint [1]
2285
0
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Secondary outcome [2]
2286
0
Nutritional status
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Assessment method [2]
2286
0
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Timepoint [2]
2286
0
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Eligibility
Key inclusion criteria
All adult patients with cystic fibrosis.
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Minimum age
Not stated
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Maximum age
Not stated
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Sex
Both males and females
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Can healthy volunteers participate?
No
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Key exclusion criteria
No exclusion criteria
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Study design
Purpose
Natural history
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Duration
Longitudinal
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Selection
Defined population
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Timing
Both
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Statistical methods / analysis
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Recruitment
Recruitment status
Recruiting
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Date of first participant enrolment
Anticipated
1/01/1996
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Actual
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Date of last participant enrolment
Anticipated
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Actual
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Date of last data collection
Anticipated
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Actual
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Sample size
Target
0
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Accrual to date
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Final
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Recruitment in Australia
Recruitment state(s)
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Funding & Sponsors
Funding source category [1]
1052
0
Charities/Societies/Foundations
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Name [1]
1052
0
Australian Cystic Fibrosis Trust
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Address [1]
1052
0
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Country [1]
1052
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Australia
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Primary sponsor type
Charities/Societies/Foundations
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Name
Australian Cystic Fibrosis Trust
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Address
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Country
Australia
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Secondary sponsor category [1]
913
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None
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Name [1]
913
0
n/a
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Address [1]
913
0
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Country [1]
913
0
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Ethics approval
Ethics application status
Approved
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Summary
Brief summary
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Trial website
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Trial related presentations / publications
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Public notes
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Contacts
Principal investigator
Name
36006
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Address
36006
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Country
36006
0
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Phone
36006
0
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Fax
36006
0
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Email
36006
0
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Contact person for public queries
Name
9717
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Associate Professor John Wilson
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Address
9717
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Cystic Fibrosis Service
The Alfred Hospital
Prahran VIC 3181
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Country
9717
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Australia
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Phone
9717
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+61 3 92763600
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Fax
9717
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+61 3 92763501
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Email
9717
0
[email protected]
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Contact person for scientific queries
Name
645
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Associate Professor John Wilson
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Address
645
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Cystic Fibrosis Service
The Alfred Hospital
Prahran VIC 3181
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Country
645
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Australia
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Phone
645
0
+61 3 92763600
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Fax
645
0
+61 3 92763501
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Email
645
0
[email protected]
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No information has been provided regarding IPD availability
What supporting documents are/will be available?
No Supporting Document Provided
Results publications and other study-related documents
Documents added manually
No documents have been uploaded by study researchers.
Documents added automatically
No additional documents have been identified.
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