Rare Disease Group

Collaboration in Obstetric Renal Disease

Increasing numbers of women with chronic kidney disease (CKD) are thinking about pregnancy. It has been known for over 50 years that CKD can affect how a pregnancy progresses and that a pregnancy can have a negative effect on damaged kidneys. However, outcomes have been improving decade by decade.

The existing Collaboration in Obstetric Renal Disease (CORD) has been adopted as a Rare Disease Group (RDG) within the Strategy for Rare Kidney Diseases of the Renal Association. The RDG consists of specialists in kidney disease, maternal medicine, midwifery and child health, as well as patient representatives. The group aims to look into how women with CKD cope with pregnancy, what can be done to improve the outcome of a pregnancy and provide ideas for areas of new research.

The group will develop care pathways for women with CKD throughout pregnancy, including:

  • contraception advice
  • preconception counselling
  • blood pressure management during pregnancy
  • preventing pre-eclampsia and neural tube defects
  • managing pre-eclampsia in women with CKD
  • managing urinary tract infections in pregnancy
  • when to start dialysis during pregnancy and optimising dialysis treatments
  • management of pregnant women with a kidney transplant
  • genetic counselling for women with inheritable diseases

Specific areas of research interest include:

  • What is the best blood pressure target during pregnancy for women with CKD?
  • Is preconception counselling for women with CKD useful?
  • How should we prevent blood clots during pregnancy in women with CKD?
  • What is the effect of protein loss in the urine on pregnancies?
  • Which women with CKD are most likely to develop pre-eclampsia?
  • What is the best way to measure kidney function in pregnant women with CKD?
  • What happens to mothers with CKD and their babies after pregnancy?

Please click HERE for more details about study Pregnancy choices with kidney disease

The Pregnancy and CKD Rare Disease Group have produced a set of recommendations for men taking mycophenolate derivatives and pregnancy following MHRA recommendations. These were updated in February 2018 following advice from the EMA.

Mycophenolate and fathers to be letter 2018

RaDaR is now providing us with long term follow-up data for women with kidney disease who have had a pregnancy. This information will help re-define how we can inform, manage and enhance pregnancy outcomes in the future. We will be providing an annual update once sufficient data have been received.

Some members of the group have worked on similar projects before and we are sharing the information we have so far in scientific journals and at meetings around the world.

If you have CKD and are considering pregnancy, it is best to talk to your kidney specialist about it as soon as possible. General advice is available here and from the sites below:

Pregnancy RDG Annual Report 2019 – 2020

RDG Lead(s)
  • Dr Matt Hall, Consultant Nephrologist, Nottingham RDG Co-Lead
  • Dr Kate Wiles, RDG Co-Lead
Patient representative(s)
  • Mr Dennis Crane, Patient Representative
  • Ms Gemma Haskey Patient Representative
Other members
  • Dr Kate Bramham, Consultant Nephrologist, London
  • Professor Nigel Brunskill, Consultant Nephrologist, Leicester
  • Professor Sue Carr, Consultant Nephrologist, Leicester
  • Mrs Floria Cheng, Specialist Midwife, London
  • Katherine Clark, Specialist Midwife, London
  • Dr Ellen Cox, Consultant Obstetrician, Birmingham
  • Dr Clara Day, Consultant Nephrologist, Birmingham
  • Mrs Claire Dodd, Specialist Midwife, Leicester
  • Professor David Edwards, Consultant Paediatrician and Neonatologist, London
  • Mrs Andrea Goodlife, Specialist Midwife, Leicester
  • Professor Liz Lightstone, Consultant Nephrologist, London
  • Dr Graham Lipkin, Consultant Nephrologist, Birmingham
  • Professor Cathy Nelson-Piercy, Consultant Obstetric Physician, London
  • Dr Joyce Popoola, Consultant Nephrologist, London
  • Dr Nadia Sarween, Research Registrar Birmingham
  • Dr Jason Waugh, Consultant Obstetrician, Newcastle
  • Dr Phil Webster, Consultant Nephrologist, London

None reported