The ICOS study Part 2 is an ongoing study since 2020, addressing the key outcomes of the Cystic Fibrosis Newborn Screening Programme introduced in Ireland in 2011. This study is a continuation of ICOS Part 1, conducted from 2013 to 2017.

Who are the research team?

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. 

We have 3 main objectives:

1. To compare the health outcomes and the impact of newly introduced CFTR modulators on children who were screened and those who were not screened for CF.
2. To look at the childcare costs incurred by parents and by the health services related to CF care
3. To look at the impact on quality of life and the challenges faced by the parents of children with CF.

What does this study require from you if you participate?

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.

What are the benefits to me and my child?

1. Better understanding of the effects of newborn screening for Cystic Fibrosis.
2. This study is a great opportunity to look at the effectiveness of newly introduced CFTR modulators at a national level, which may inform future medical practice.
3. We will be using the Challenge of Living with CF-Short Form questionnaire, specifically designed for parents of children with CF. This will allow us examine the key challenges faced by parents and identify what supports are needed.
    

We are inviting all parents of children with Cystic Fibrosis in Ireland that were born after July 2008 to take part in this study with their children.

In order to participate: Please ask for the “ICOS CONSENT FORM” from your child’s CF consultant or specialist nurse.

For more information please contact:

Dr Rini Bhatnagar at rini.bhatnagar@ucdconnect.ie or call at 0894448701

Dr Nancy Bhardwaj at nancy.bhardwaj@ucd.ie

Prof Patricia Fitzpatrick at patricia.fitzpatrick@ucd.ie