Families living with rare diseases are being invited to complete an online questionnaire about preconception carrier-screening (please see web link below). The questionnaire is part of the Australian Genomic Health Alliance (AGHA) preconception carrier screening flagship program being drafted currently. The study is being conducted by a multidisciplinary research team led by Professor Nigel Laing at the University of Western Australia (Ethics number: RA/4/1/8847).
The questionnaire should take approximately 15 mins to complete and you can complete the questionnaire on any platform including laptops, desktop, tablets or phones. Your participation will contribute towards identifying attitudes and opinions in relation to preventing severe recessive diseases through a preconception carrier-screening program in Western Australia. This will help to identify future research priorities in this area. We would be very appreciative of your involvement in this important research.
The questionnaire is strictly confidential and anonymous. In order to ensure anonymity, please note that you will not be able to save your responses and return to the survey at a later stage. Please review your responses before clicking ‘next’ or ‘submit’ to send your completed survey. You will not be able to return to your responses after submitting the survey. Data from incomplete surveys will be deleted.
Please click on the web link here to begin the questionnaire. Thank you very much for giving your time to help us with our research.
For more information about the research and how your participation is important to our study, please visit this website.
If you have any queries or comments about the questionnaire or the research study, please contact:
Professor Nigel Laing (Chief Investigator)
NH&MRC Principal Research Fellow
Centre for Medical Research
University of Western Australia
Harry Perkins Institute of Medical Research, QEII Medical Centre, Nedlands, Western Australia 6009