What is already known about this topic and why is it important?

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. Having dialysis is extremely challenging for a new mother and her family and the mother’s life expectancy will be shortened. Even women with less severe kidney disease are more likely to have pregnancy complications. 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. In addition, there is no information about pregnancy risk for women with rare kidney diseases.

How will you carry out your study?

We plan to develop an online calculator from information from thousands of pregnant women with kidney disease 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.

How will you decide which patients are included in your study?

All women with a previous diagnosis of kidney disease will be included i.e. consented to participate in Rare Renal diseases (RaDaR) Registry, or UK Renal Registry for renal replacement therapy.

How many patients do you anticipate including?

Approximately 3000 women

(500 women RaDaR Pregnancy CKD, 2000 other RaDaR patients, 500 UKKR RRT patients)

For how long will you follow up these patients?

N/A

What new information will your study generate and how will this benefit patients?

The study will allow us to provide accurate information for women and their partners who are 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.