‘Perceptions of gene therapy for cystic fibrosis airway disease’
Dr Ivanka Prichard & Ivana Osenk, School of Health Sciences, Flinders University (Ph: 8201 3713)
Dr Martin Donnelley, Robinson Research Institute, University of Adelaide (Ph: 8161 9181)
Associate Professor David Parsons, Robinson Research Institute, University of Adelaide (Ph: 8161 7004)
Description of the study:
This project will investigate perceptions of gene therapy for cystic fibrosis airway disease. This project is supported by the School of Health Sciences at Flinders University.
Purpose of the study:
This project aims to assess the beliefs and attitudes towards gene therapy for Cystic Fibrosis (CF) among people with CF, their families, and the general community who are not affected by CF.
What will I be asked to do?
Participants will be asked to complete a questionnaire on your knowledge and experience with CF, as well as your thoughts and perceptions about gene therapy for the disease as well as some other treatments. Participation is entirely voluntary. The survey will take approximately 15-20 minutes to complete.
What benefit will I gain from being involved in this study?
There will be no direct benefit to participants. However, the information provided may help with the advocacy work of those living with CF, and their parents, caregivers and friends.
Will I be identifiable by being involved in this study?
We do not need your name and you will be anonymous.
Are there any risks or discomforts if I am involved?
The researcher anticipates few risks from your involvement in this study; however given the nature of the project some participants could experience emotional discomfort. While we think it is unlikely, should any items in the questionnaire raise concern for you, you are invited to contact the researchers for more information. Alternatively, you could talk to a CF primary care physician or contact the free and confidential service provided by Lifeline on 13 11 14 (Australia), Samaritans on 116 123 (UK) or Reach Out on 1-800-448-3000 (US).
How do I agree to participate?
Participation is voluntary. You may answer ‘no comment’ or refuse to answer any questions and you are free to withdraw from the study at any time without effect or consequences. Please click on the link below to complete the questionnaire. Completion of the survey will be considered as informed consent.
How will I receive feedback?
On project completion outcomes of the project will be shared with the CF community via community organisations and support groups.
Thank you for taking the time to read this information sheet and we hope that you will accept our invitation to be involved.