Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Description:
https://clinicaltrials.gov/ct2/show/NCT01134822
The PROFILE study is a longitudinal observational study of patients with Idiopathic Pulmonary Fibrosis and Non Specific Interstitial Pneumonitis. Patients were recruited to the study within 6 months of diagnosis and followed up for three years with physiological, biological, genetic and quality of life assessments assessments at various intervals over these three years. The aim of this study was to understand the natural history of fibrotic lung disease and identify factors that would be able to predict the heterogenous disease course amongst these patients.
Coverage
Spatial:
United Kingdom,England
Typical Age Range:
30-89
Follow Up:
1 - 10 Years
Provenance
Origin
Collection Situations:
- Clinic
- Primary care - Clinic
Temporal
Accrual Periodicity:
Static
Distribution Release Date:
05 October 2017
Start Date:
26 July 2010
End Date:
05 October 2017
Time Lag:
Not applicable
Accessibility
Access
Access Rights:
Access Request Cost:
Data provision is free from SAIL. Overall project costing depends on the number
of people that require access to the SAIL Gateway, the activities that SAIL
needs to complete (e.g. loading non-standard datasets), data refreshes,
analytical work required, disclosure control process, and special case
technological requirements
Delivery Lead Time:
Not applicable
Jurisdictions:
GB
Data Controller:
BREATHE
Data Processor:
BREATHE
Usage
Data Use Limitations:
General research use
Data Use Requirements:
Project-specific restrictions
Resource Creators:
The PROFILE (Central England) cohort was generated at The Nottingham University NIHR respiratory Biomedical Research Unit with funding from a Medical Research Council (MRC MICA award G0901226).
Format and Standards
Vocabulary Encoding Schemes:
- LOCAL
- READ
- NHS NATIONAL CODES
Languages:
en
Formats:
CSV