1. Cystic Fibrosis Ireland Member's Survey - Have your say

CFI is currently undergoing an important strategic review to ensure that we continue to support and respond to the evolving needs of our CF community. As part of this process, we want to give all our members the opportunity to have their say by completing a confidential member survey. This is your opportunity to tell us how we are doing and what you would like to see us doing to support you in the future.

Who can take part?
This survey is open to people living with CF in Ireland aged 18 or over and their family members and partners

What is involved?
We would like you to answer this survey. There are between 40 and 70 questions and we anticipate it will take you 20-25 minutes to complete. You can come and go from the survey if you need to. As long as you login from the same device it should save your position. The survey asks questions about you, your relative with CF; your experience of CF care; your experience using CFI services such as grants, Spectrum members magazine, annual conference; Advocacy for better services; Personal Advocacy and Research. 

Is the survey confidential?
We are not collecting data such as your name, address or contact details. You may be identifiable from some of the answers that you might provide to questions. We will remove any identifiable information from your data and aggregate data will be reported. We may use some of your answers from open-ended questions in quote form to highlight findings, any identifiable information will be removed. The IP address from the device which you use to respond to the survey will be collected. This is to allow you to return to the survey if you need to complete it at a later point. 

To enter the prize draw you will be asked to click on a link to a separate survey. The data you enter here (name and contact details) will be used for the purposes of administering the prize draw only and will not be linked to any data you have included in the members survey.

How will CFI use my data?
CFI will use the results of this survey to inform our work and the services and supports we provide to our members. We may use the data to advocate for additional supports or resources for people living with CF and their families. CFI will produce a report summarising some of the data collected. Any data published will be done anonymously using aggregated results. We may use quotes which you might provide when answering some of the open-ended questions. If we use a quote we will remove any personal identifiable data which you might have included and the quote will be attributed to you more generally, such as "person living with CF" or "parent of a child with CF". 

If you have any questions about this survey please contact Sarah Tecklenborg stecklenborg@cfireland.ie or Samantha Byrne sbyrne@cfireland.ie