Ireland Has Highest Rates of Cystic Fibrosis in the World, But is Leading With Research
By Maggie Holland, Editorial Assistant
January / February 2019
1 in 19 people in Ireland are carriers of the Cystic Fibrosis gene. In 2010, Professor Paul McNally and Dr. Barry Linnane set up the SHIELD Cystic Fibrosis study, a wide-ranging long-term study into Cystic Fibrosis. It involves over 250 children who have attended Our Lady’s Children’s Hospital, Crumlin, Tallaght, and Limerick.
As a result of the combined efforts of research teams around the world over the last 20 years, the average predicted survival rate in cystic fibrosis has increased from 25 years to 41 years.
Professor McNally says that there hasn’t been one patient in seven years who has declined to take part in the research study. “Without research there is no progress in medicine. Research is the future. It has at its heart a concept of striving for excellence and constantly driving improved outcomes,” he says.
The study is of longitudinal nature, so samples are taken from patients as young as one and throughout their early childhood years, and followed up until their late teens. Although valuable insights have been made through the study so far, it is very much in its early years.
The ultimate long-term goal of the SHIELD CF project is to better understand the evolution of lung disease in children with CF. McNally added, “The structure of SHIELD CF will allow it to bear fruit for a generation. Research projects like this result in new possibilities, improved quality of care, and longer life expectancy for children with CF.” ♦