CF Ireland is currently supporting a number of research projects...
Irish Comparative Outcome Study of Cystic Fibrosis (ICOS) - Part 2
This study is led by Professor Patricia Fitzpatrick, Full Professor of Epidemiology and Biomedical Statistics at University College Dublin (UCD), and her research team at UCD, in collaboration with Paediatric Cystic Fibrosis Consultants and nurses from six specialist CF hospitals: University Hospital Limerick, University Hospital Galway, Cork University Hospital, Children’s Health Ireland at Crumlin, Children’s Health Ireland at Temple St and Children’s Health Ireland at Tallaght. This study is funded by the HRB.
The study requires consenting parents to allow the researchers to access their child’s medical charts and CF Registry data, and to complete cost and quality of life questionnaires over the telephone/by post/email. All data is totally confidential.
Click here for further information on this research project or to register your interest in taking part.
Jen Balfe, a researcher in the RCSI University of Medicine and health Sciences, mother of two and a person with Cystic Fibrosis(pwCF) was awarded a grant by the Irish Research Council in conjunction with Cystic Fibrosis Ireland for a project called ‘Exploring the experiences of people with Cystic Fibrosis and the healthcare professionals involved in their care during the pre-conception to post-partum period’.
Since the introduction of Highly Effective Modulator Therapies like Kalydeco and Kaftrio, pwCF have been experiencing a greater quality of life, fewer exacerbations and pregnancy rates in women with CF have increased. The rising numbers of pwCF becoming pregnant has highlighted the need for more information and resources to help pwCF and their healthcare teams as they navigate a pregnancy journey.
Whilst studies in the area of pregnancy and fertility with CF have increased internationally, there is a lack of data as to how pwCF experience a pregnancy journey whilst living in Ireland. In fact we know very little about how pwCF experience accessing and utilising fertility and pregnancy services in Ireland and very little about how the healthcare teams involved in their care experience delivering care to pwCF during this time. This is the first study of its kind in Ireland which seeks to examine the enablers and barriers to care for pwCF and their teams.
Click here for more information.
Exploring diet quality in Cystic Fibrosis – enablers and barriers to eating a healthy diet in CF
Dr Audrey Tierney, a Senior Lecturer in Nutrition and Dietetics at the University of Limerick was awarded a grant by the Health Research Board (HRB) and the Health Research Charities of Ireland (HRCI) with Cystic Fibrosis Ireland for a project called ‘Exploring diet quality in Cystic Fibrosis – enablers and barriers to eating a healthy diet in CF’.
We know that a diet high in energy and fat has typically been advised to people with CF to reach weight or body mass index (BMI) goals because of the relationship between BMI and lung function. Often times these diets tend to be higher in saturated fat, sugar and salt and lack essential nutrients. Whilst studies in this area have documented nutrient intakes (e.g. energy, fat, carbohydrates, protein), there is a lack of data on overall diet quality, especially in adults with CF (i.e. meeting food groups, getting sufficient vitamin intakes etc). In addition, no study has addressed the drivers and barriers to eating a healthy diet for people with CF.
Click on the link below for further infomation on this research project or to register your interest in taking part.
The realities of living with CF in Ireland for children and young people
Rebecca Long, a Masters student in Carlow IT, is writing her thesis for an MA in Child, Youth & Family Studies, and is looking at the realities of living with Cystic Fibrosis in Ireland for children and young people. Rebecca wants to develop creative resources and supports that will empower this age group to tell their story and to better understand how C.F. impacts on their lives.
Rebecca would like to know more about the day to day lives of families living with experiences of C.F. in Ireland. To do this she has come up with a series of surveys and will hold online focus groups.
Speaking about her research, Rebecca says;
"C.F. is a well-researched condition, but I feel that there’s a gap when it comes to hearing the voices of children and young people living with C.F., and their families, in that research. I hope my thesis project starts to fill this gap."
Recruitment for this project is now closed, thank you to everyone who expressed an interest in taking part.
CFI will share results of the research when complete.
The Impact of COVID-19 on people with CF, children with CF and their families
Cystic Fibrosis Ireland undertook a survey of people living with CF in Ireland and their families to identify their concerns around Covid-19 and the daily challenges they are facing in light of the outbreak. The survey saw 300 responses in total (105 people with CF; 195 parents/relatives) and was undertaken in late March/early April 2020, the same week that cocooning guidance was introduced.
In conjunction with UCD, a follow up survey was carried out to take a more in-depth look at the impact Covid-19 had on the CF community in Ireland.
Dr. Rini Bhatnagar, PhD student, is the lead researcher on this study.
The Role of Memory within the Medical Appointment
Dr. Michael Twomey's PhD research is focused upon developing a patient management system that enables people with CF to capture their medical/health history accurately between appointments and record key information communicated by clinicians. This project is being funded by the Irish Research Council and CFI.
Pending the outcome of Michael’s research, CFI is additionally working with Dr. Des Cox in Crumlin Children’s Hospital to convert the present parents’ handbook and diary into a smartphone app.
The outcomes from these two important projects will inform our future strategies on adherence and self-management.
Digital Health for CF and Medical Multimedia
Dr. Tamara Vagg is leading a research project into the role of digital health in CF care.
Oral Health in Adults with CF
Researchers at University College Cork are leading a study to learn more about the oral health of PWCF and their dental experiences, to ensure PWCF are receiving the best dental care. The study is led by Dr. Martina Hayes.
At our 2021 Annual Conference a session was held outling some of the projects CFI are involved in. You can watch the session back below.
Recommendations to Improve Physical Activity Prescription for the Cystic Fibrosis Population: An Irish Perspective
Ms. Nicola Hurley was selected for a four year PhD to carry out pioneering research into the role of exercise and its effects on physical fitness, muscle strength, bone health and quality of life in patients with CF.
CFI is also working on an exciting new initiative within MedEx the chronic illness rehabilitation programme run by Dr. Noel McCaffrey in Dublin City University (DCU), following the recommendation of the Head of the Mater Lung Transplant Unit, Professor Karen Redmond. This will be co-funded by the Mater Foundation with funds raised by family and friends of the late Becky Jones.
