PREDICT Study: RaDaR and UKRR Linked Dataset
Research type
Research Study
Full title
PREgnancy-associated progression of chronic kidney DIsease: development of a Clinical predictive Tool (PREDICT): The National Registry of Rare Kidney Diseases (RaDaR), UK Renal Registry (UKRR), Hospital Episode Statistics (HES) and NHS Digital linkage study
IRAS ID
270871
Contact name
Kate Bramham
Contact email
Sponsor organisation
King's College Hospital NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 28 days
Research summary
About one in three women with severe kidney disease have permanent damage to their kidneys during or after pregnancy and may need dialysis to survive. At the moment, there is no reliable way to work out which women with kidney disease are likely to have pregnancy-associated disease progression or if their babies are likely to be born early or very small. Information for women with rare kidney disease is even more scarce and larger cohorts are needed in order to accurately describe likely pregnancy outcomes.
We plan to develop an online calculator which can predict how much kidney function women are likely to lose in pregnancy and if her baby is likely to be born prematurely or small.
To do this, we will use data from all women with a previous diagnosis of kidney disease who are included in the following cohorts:
National Registry of Rare Kidney Diseases (RaDaR):Pregnancy and CKD groups and 57 other rare disease groups
UK Renal Registry (UKRR: Women having dialysis or kidney transplant)
Women identified to have CKD with International Classification Disease (ICD-10)coding in Hospital Episode Statistics
Data will be linked by NHS digital to Hospital Episode Statistics (HES) and the Maternity Services Data Set (MSDS) to identify which of these women with kidney disease have been pregnant, and to extract pregnancy outcomes for these women. Renal outcomes will be extracted from UK RR data including biochemical data through linkage with Patient View for women who are signed up to this network.
The study will allow us to provide accurate information for women with kidney disease and their partners considering a pregnancy including women with more rare renal disease. The data will help them to understand how likely they will have a deterioration in their kidney function, or if their baby will be born early or small.REC name
London - Bloomsbury Research Ethics Committee
REC reference
20/LO/0298
Date of REC Opinion
15 Apr 2020
REC opinion
Further Information Favourable Opinion