Funding innovation for cystic fibrosis

In 2022, the KHP Cardiovascular and Respiratory Partnership hosted a second funding round for projects that would: deliver innovation in care for patients; provide career development opportunities for staff; and leverage investment for growth. 

The Royal Brompton (RBH) Cystic Fibrosis (CF) Reproductive & Maternal Health Innovation project was awarded pump-prime funding of £75,000 to deliver a streamlined and joined-up service for the benefit of patients. The KHP Cardiovascular & Respiratory Partnership supported this project until early 2024, focusing on service innovation and harnessing the significant breadth and depth of cross-partnership expertise in both CF and Obstetric medicine.

Unmet needs in cystic fibrosis

Ultimately, the project aimed to tackle the generally poorer outcomes of pregnancies with CF in comparison to those without CF and address the unmet clinical and research needs regarding CF-reproductive, maternal, and neonatal health issues. 

The RBH CF Reproductive & Maternal Health Innovation Project has been awarded £800,000 by the Cystic Fibrosis Trust to continue its research on reproductive and maternal health for those with CF, including pregnancy, childbirth and breastfeeding. The grant is one of four new research grants (totalling £2million) targeting key research priorities identified by people with CF – ranging from alternatives to current treatment, to helping support people with CF as the population is getting older.  

In August 2020, Kaftrio (CFTRm) (a medicine used to treat patients aged 12 years and above who have CF) became commercially available to people with CF who were eligible under NHS England commissioning. These advances in care of people with CF increased the life expectancy and proportion of women of child-bearing age. This resulted in a striking unmet need to support people with CF on their reproductive and maternity health journey. 

The innovation project has been a huge success with achievements across the Cardiovascular & Respiratory Partnership Programme key areas, including clinical, research and educational excellence.

For example, the RBH team developed a unique clinical and academic CF Reproductive & Maternal Health service network to improve the patient experience and contribute to multi-professional education, research and career advancement opportunities. They also developed a virtual CF and gestation-specific group airway clearance and antenatal exercise classes with pelvic floor focus. 

Additionally, a dedicated multi-disciplinary team tracked and supported women through conception and pregnancy, integrated a virtual service model with local midwifery/obstetric teams, and ensured ongoing patient engagement through service evaluation and focus groups. The innovation project was also successful in being awarded a second £75,000 grant, this time from the RBH Charity, which funded a second maternal health fellow. 

Finally, the RBH CF Reproductive & Maternal Health service featured in the April 2023 ‘CF Life Magazine’, won first prize at the Diabetes UK Pregnancy Conference and European CF Society Conference for submitted abstracts in November 2022 and June 2024 respectively, and presented at the Transformation Forum, Royal Society of Medicine in 2022, and invited to speak at forthcoming British Menopause Society Scientific Conference and North American CF Conferences in 2024.

The RBH CF Reproductive & Maternal Health innovation project team applied for the Cystic Fibrosis Trust’s grant to continue its ground-breaking work in 2023. The ‘MATeRnal, InfAnt, Reproductive & Child Health in CF (MATRIARCH)’ is one of two new Strategic Research Centres (SRC) that received the funding and will examine the impact of pregnancy, childbirth, and breastfeeding for those with CF.

While we know access to CFTRm has increased the number of people with CF having children, little is known about the impact of these medicines during pregnancy and breastfeeding. The MATRIARCH SRC will be led by Dr Imogen Felton [pictured] and Prof Jane Davies OBE of Royal Brompton Hospital and Imperial College London. Dr Felton said:

After such exciting advances in the management of CF over the past few years with many more life opportunities now available, our patients really led the way in asking us to provide a better evidence base for them to make choices about their own reproductive health goals and routes to parenthood. One of the aims of the original 2022 KHP clinical and academic innovation award for CF maternal health was to pump-prime for future research funding, and thanks to the Cystic Fibrosis Trust’s grant, we have certainly achieved that!

By virtue of our established vertical-model of paediatric-to-adult CF care and research at Royal Brompton Hospital, our collection of studies with international clinical-scientists and epidemiologists, will not only pave the way to better understand the interplay of pregnancy on CF-maternal health but also the impact of new CF treatments in utero on offspring health in this modern therapeutic era. I am delighted that with this new grant we will be able to continue our research to support CF patients throughout their reproductive health journeys.

The programme of research will be undertaken in collaboration with Imperial College London, Kings College London, University of Liverpool, Chelsea and Westminster Hospital NHS Foundation Trust, Cardiff Metropolitan University, University of Alabama, USA, and University of Pittsburgh School of Medicine, USA. 

The Cystic Fibrosis Trust is the only UK-wide charity dedicated to uniting for a life unlimited for everyone affected by cystic fibrosis. The Trust funds cutting edge research, provides confidential advice, support, and information on any aspect of cystic fibrosis, including help with financial support.

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King’s Health Partners Cardiovascular and Respiratory Partnership brings together clinical and academic experts across respiratory and allergy specialties, focusing on education and training, research and clinical services. The partnership also aims to transform service delivery and generate research advances to revolutionise cardiovascular prevention and care.