Identifying trends in patients with CKD using routinely collected data
Research type
Research Database
IRAS ID
258351
Contact name
Nicholas Sangala
Contact email
Research summary
Wessex Kidney Centre Patient Records Database
REC name
North West - Haydock Research Ethics Committee
REC reference
21/NW/0115
Date of REC Opinion
22 Apr 2021
REC opinion
Favourable Opinion
Data collection arrangements
The database will be stored in accordance with nationally accepted information governance (IG) standards and in keeping with PHT data-handling policy. The data will only be stored on trust servers and secured, encrypted devices by researchers directly involved with the database.
The database will be anonymized at the first opportunity in such a way that the risk of re-identification is kept to an absolute minimum (i.e. The information remaining in the database will be ‘bland’ and impossible to reverse engineer back to its original state without access to the original data itself). Even though the data is pseudo anonymized, it will still be kept securely with double encryption in the form of encrypted flat (.csv) files stored on encrypted drives.
The data will never be transferred or stored in any non-encrypted fashion, nor will it be used for any other purpose.
As the data is only to be used for research, there will only be one backup (on trust servers) and the main copy will be held on the encrypted drive. In the event of a disaster the data must be recompiled. No raw data will be shared with any outside organizationsResearch programme
This database is supported by staff from the Wessex Kidney Centre at Portsmouth Hospitals University NHS Trust The Wessex Kidney Centre collects a very large amount of data from clinical contact with patients under its care. This includes recordings of clinical observations during dialysis sessions, results of blood tests for dialysis adequacy or transplant function and clinical records during hospital outpatient and inpatient episodes. Whist most of the data derives from hospital-based, some is also generated by patients themselves e.g. when undertaking home dialysis. All this data is stored on the renal unit’s clinical database. Analysis of this data will help identify ways in which patient care can be improved. For instance, a recent analysis of data collected from patients undergoing haemodialysis noted a previously unrecognised relationship between blood pressure variation across dialysis and symptomatic hypotension during dialysis (1). This generated a further research project and has lead to greater understanding of how dialysis should be managed to minimise harm to patients. This has been disseminated nationally. The analysis of this data will be supported by colleagues at the University of Portsmouth who have honorary research contracts with Portsmouth Hospitals University NHS Trust.
Research database title
Wessex Kidney Centre Patient Records Database
Establishment organisation
Queen Alexandra Hospital
Establishment organisation address
Southwick Hill Road
Cosham
Portsmouth
PO6 3LY