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Cystic Fibrosis Trust help fund ENHANCE study to understand CF in young children
The ENHANCE study (Establishing Natural History in an Advanced New CF Care Era) has been awarded €5.6M ( $5.9M from Cystic Fibrosis Foundation in the US, with a separate £100,000 grant for study equipment from Cystic Fibrosis Trust in the UK), and will be led by the CF research team at Children’s Health Ireland. Research will be carried out at 13 paediatric CF clinic sites in Ireland and the UK over the next five years, and help to build a better understanding of CF.
Though people with CF have more treatment options now, there is still much we need to understand about cystic fibrosis in babies and children. This study will monitor how CF complications develop in small children, and how different groups of children with CF develop features of the condition. The research will also compare children of a similar age with and without CF.
The ways that we can help children with CF have evolved considerably over the last 15 years, notably with new medicines becoming available, and many children will start these treatments from very early in life. This means the outlook for children with CF is considerably better than it was 15 years ago, but there is much about this that we don’t yet understand.
Paul McNally, Associate Professor of Paediatrics at RCSI and Consultant in Respiratory Medicine at CHI
We spent a long time working with parents of children with CF in Ireland and the UK to understand how best to design the study, as we wanted to ensure we are concentrating on the things that are most relevant to children with CF and their parents in this new era,” he said. “Parents of children with CF and other representatives from the CF community will be part of the study group and help us to ensure that we stay focused on our goals
Paul McNally will lead ENHANCE with Jane Davies, a consultant in paediatric respiratory medicine at Royal Brompton Hospital, part of Guy’s & St Thomas’ NHS Foundation Trust and a Professor at the National Heart and Lung Institute, Imperial College London.
ENHANCE will be a really important study for the whole CF community. By including children from underrepresented groups and those who cannot access some CF treatments we will get a broad and comprehensive understanding of this new era of CF in childhood. While we have made much progress as a community, more remains to be done, and it is through studies like ENHANCE that we can understand and focus on the next challenges faced by children with CF and their families.
Professor Jane Davies
Cystic fibrosis is a complex condition affecting many parts of the body. Although significant progress has been made in the treatment of cystic fibrosis in recent decades, we know that understanding the long term effects of CFTR modulator medicines is a top research priority for the CF community. Through our funding of the ENHANCE project we are driving significant research that will address this priority and ultimately support people with cystic fibrosis to live longer, healthier lives.
Dr Lucy Allen, Director of Research and Healthcare Data at Cystic Fibrosis Trust
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.
Despite improvements in treatments, cystic fibrosis is still a cruel condition without a cure and there is still so much more to do to stop CF damaging and shortening lives.