PREDICT: West Kent
Research type
Research Database
IRAS ID
255965
Contact name
Christopher Farmer
Contact email
Research summary
PREgnancy-associated progression of chronic kidney DIsease: West Kent
REC name
London - Bloomsbury Research Ethics Committee
REC reference
19/LO/1242
Date of REC Opinion
11 Sep 2019
REC opinion
Favourable Opinion
Data collection arrangements
Data collection for West Kent will include data from West Kent Hospitals University NHS Foundation Trust (WKHUFT) all electronic Health Record clinical
information systems covering all acute hospital admissions and outpatient attendances over the previous six year period (Calendar Years 2013-2018 inclusive).Data will be collected directly by members of the East Kent Hospitals University Foundation Trust (EKHUFT) IT team who have routine access to all data concerned. Only retrospective, routine data will be collected; no data will be collected from patients solely for the purpose of inclusion in West Kent Data. Data will be de-identified by the EKHUFT IT team (which may include subcontractors) prior to transfer to UoK for storage of the dataset. Project-specific re-hashing of pseudonymous identifiers will also be undertaken in UoK for each project using the dataset, ensuring that applicants only receive fully de-identified data from West Kent data.
Key files linking the dataset to personal information will not leave EKHUFT and will remain in the control of the Trust’s Caldicott Guardian, this will be held to allow for any incidental clinical findings to be acted upon or data removed from West Kent Data if patients wish to withdraw their data.
Research programme
The West Kent database will support high quality research into the use of healthcare data to predict risk and patient outcomes to better inform clinical decision making. The database was initially set up to support the research project; PREDICT (Pregnancy-associated progression of Chronic Kidney Disease; developing a clinical predictive tool) which is developing a prediction tool for pregnancy-associated progression of CKD using data from approximately 54,000 women. In order for predictive tools to be generalisable, multiple external validations in diverse patient groups including individual patient data from population cohorts are necessary. A preliminary predictive tool for pregnancy progression of CKD will be trialled in pre-existing longitudinal cohorts of women recruited to NIHR portfolio studies (Pre-Eclampsia And Chronic Hypertension, rEnal and SLE (PEACHES) and Pregnancy Adaptation in Renal disease Study (PAIRS)). This will then be refined and tested in two further datasets (UK Rare Renal Diseases Registry (RaDaR) and CKD Pregnancy Clinic (PreKid). Finally it will be externally validated with three international population datasets from UK (Kent Integrated Data), Canada (Ontario Renal Network) and Sweden (Stockholm CREAtinine Measurement (SCREAM).
Research database title
PREgnancy-associated progression of chronic kidney DIsease: West Kent
Establishment organisation
University of Kent
Establishment organisation address
Centre for Health Services Studies
University of Kent
Canterbury
CT2 7NZ