Following research investigating the oral health of adults with Cystic Fibrosis, a research team have developed a new website https://oralhealthcf.ie/ as an information hub for people with Cystic Fibrosis (pwCF).
The study was carried out in University College Cork, in collaboration with Cystic Fibrosis Ireland (CFI). The research, which explored the oral health challenges faced by individuals with Cystic Fibrosis (CF), and the subsequent development of the website were funded by the Health Research Board.
The research team included Professor Martina Hayes and Dr Fiona O’Leary from University College Cork and Dr Niamh Coffey, Senior Lecturer in RCSI's School of Dentistry. The project also had significant input from CF advocates, Caroline Heffernan and Rory Tallon, along with others living with CF, who were integral to bringing the voice of our members to the core of the project.
Leading a number of studies over the past number of years which looked at the oral health of a group of people with CF, the research team also conducted the largest clinical study globally on this topic. Crucially, they also investigated the attitudes and knowledge of oral health professionals around CF, as well as the experiences among the CF community accessing dental care.
Among the findings, the team discovered that adults with CF experienced more dental decay, more calculus build up and more dental plaque than in a comparison group of adults without CF. The team also found more developmental defects in dental enamel which affects the way the teeth appear putting pwCF at higher risk of dental decay.
CFI were proud and delighted to support the research and attend the launch of the website which provides essential information about the oral health of adults and children living with CF.
Sarah Tecklenborg, CEO CFI, attended the launch event, a virtual ribbon cutting held on the 9th January 2025, stating “This website is a really great example of the importance of partnerships between research teams, clinicians and patient advocates and how research can be translated into tangible, impactful resources which improve the daily lives of those living with CF.
“CFI would like to acknowledge and thank the incredible work of the research team, funders, patient advocates and all those who have contributed to this website launch today.”
This website provides useful information about attending dental practice, transplants and oral health, reflux and dental erosion, inhaled steroids and candida and many more topics relevant to people with CF. For example research into commonly consumed oral nutritional supplements highlighted the high sugar content of some of these drinks and recommended that people using them inform their dentist so they can recommend products to mitigate against the damage to teeth from these products.
There’s also a section for parents of children with CF with information on enamel defects and the impact of nutritional supplements on dental decay risk and more.
Caroline Heffernan, person with CF and CFI Patient Advocate was part of the project from the very beginning.
“This is a fantastic resource for people with CF, dentists and other medical professionals can access. This project began during Covid which were difficult times for many, without beginning a project such as this,” Caroline shares.
“I'd like to thank you so much on behalf of my community. Thank you for bringing research into real lives and making it accessible for those who may not understand the ins and outs of CF.”
To visit the website, click here. To watch the recording of the event, click here.
ENDS