MATRIARCH SRC - MATeRnal InfAnt Reproductive & Child Health in CF

Led by Dr Imogen Felton and Professor Jane Davies at the Royal Brompton Hospital in London, a group of researchers and doctors with wide-ranging expertise have been awarded a Cystic Fibrosis Trust-funded Strategic Research Centre grant to answer new questions about the sexual and reproductive health of women with CF, focusing in particular on pregnancy, maternal and infant health.

Overview

Access to modulators has increased the number of people with CF having children, and people with CF want to know more about the effects of modulators on areas of the body outside the lungs. Currently little is known about the impact of these medicines during pregnancy and breastfeeding.

The researchers hope that the impact of this SRC programme will be to provide evidence-based information, in an easy-to-use and easy-to-understand way for women with CF and their families to help them decide what is right for them. It will also support CF teams and non-CF clinical teams across the country to support and care for women with CF and their newborn children.

Strategic Research Centre in more detail

There are five areas of work within this SRC, explained in more detail below.

  • Using registry data to understand maternal and infant health

    The researchers will use registry data to understand the health of women with CF who have had children in the past, and improve how registry information can be used by researchers in the future to study the health of women with CF and their children. This includes ensuring that the UK CF Registry and US CFF patient registry collect data in a way that makes comparisons easier, and exploring whether it is possible to link data from the UK CF registry with information from the UK obstetric database for individuals with CF.

  • Starting a new monitoring study

    In addition to monitoring women’s health from data within health databases, researchers at the Royal Brompton Hospital will ask pregnant women with CF to join a study that monitors their physical and mental health in more detail, including women who are taking modulator medicines and those that are not. Part of this study will include in depth interviews about their experience of pregnancy and maternal health. This will enhance and add to ongoing work such as the Trust’s Homestart pilot and the US ‘Mayflower’ research study. 

  • Developing guidance and support

    Working with members of the CF community, the researchers wish to improve the information and guidance available for women with CF and their families when it comes to family planning, from decision making about having a family, support in pregnancy and advice on the complexity of caring demands while parenting with CF. These will build on other resources and support being developed in Europe and in the US.

    Researchers also have a wider aim to improve the guidance and support for people with CF and their families on their sexual and reproductive health throughout their lives. This could cover topics such as contraceptives and family planning, fertility, vaccinations and cancer screening, through to advice and support around the menopause.

  • Understanding the effects of Kaftrio on unborn babies and young infants

    If pregnant and new mothers with CF are taking modulator medicines, their babies are also exposed to these medicines across the placenta and in breast milk. More research is needed to understand the effect of the medicines on babies. This might include improvements in newborn health (if the baby also has CF) or there could be side effects of the medicines.

    The researchers will be conducting two studies to understand more about the effects of CF modulator medicines on the health of these children, the majority of whom will be healthy CF carriers. The first is to monitor the health of children exposed to modulators and whose mothers attend the Royal Brompton clinic. The second is to study the effects of modulator medicines in the lab.

  • Measuring Kaftrio levels accurately

    Kaftrio is a medicine that contains a combination of three different drugs. To understand the effects of Kaftrio in pregnancy and breastfeeding, it is important to be able to accurately measure the levels of the component drugs babies are receiving from their mother. Chemists will develop new ways of measuring the levels of these drugs and their breakdown products. They will develop methods for analysing samples of maternal and infant blood, and from breastmilk. This will be a useful test for CF care more generally as well as studies of pregnancy and infant health.

Researchers working on this SRC

An international team of 20 researchers with wide-ranging expertise will be working together on the studies within this SRC. The researchers are based at the Royal Brompton Hospital and Imperial College, and other clinical academic institutes from London to Wales, Northwest England and the US.

Co-principal investigators: 

Dr Imogen Felton, Royal Brompton Hospital and National Heart & Lung Institute, Imperial College London.

Professor Jane Davies, National Heart & Lung Institute, Imperial College London and Royal Brompton Hospital.

  • Co-investigators

    Prof Siobhan Carr, Royal Brompton Hospital

    Dr Jamie Duckers, University Hospital Llandough

    Dr Gwyneth Davies, UCL Great Ormond Street Institute of Child Health

    Dr Daniela Schlüter, University of Liverpool

    Prof David Taylor-Robinson, University of Liverpool

    Dr Oluwaseun Esan, University of Liverpool

    Prof Catherine Nelson-Piercy, Guy’s & St Thomas’ Foundation Healthcare Trust

    Prof Catherine Williamson, Imperial College London

    Dr Rebecca Scott, Chelsea and Westminster Hospital

    Dr Tom Semple, Royal Brompton Hospital

    Prof Susan Birket, University of Alabama

    Dr Traci Kazmerski, University of Pittsburgh School of Medicine

    Dr Rhiannon Philips, Cardiff Metropolitan University

    Dr Rebecca Dobra, Imperial College London

    Olivia Beaumont, King’s College Hospital

    Prof David Cowan, King’s College London

    Dr Vincenzo Abbate, King’s College London

    Sian Bentley, Royal Brompton Hospital

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What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs. There are around 11,000 people living with it in the UK.

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