We are inviting you 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 below to begin the questionnaire.
Thank you very much for giving your time to help us with our
research.
http://www.surveygizmo.com/…/families-living-with-rare-dise…
For more information about the research and how your
participation is important to our study, please visit:
https://www.perkins.org.au/…/online-survey-on-severe-reces…/
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
Email: nigel.laing@uwa.edu.au
Tel: +61-(0)8-6151-0741
Mobile: 0407-982-141
Mailing address:
Harry Perkins Institute of Medical Research, QEII Medical Centre,
Nedlands, Western Australia 6009
Dr Gina Ravenscroft (Co-Investigator)
Centre for Medical Research
University of Western Australia
Email: gina.ravenscroft@uwa.edu.au
Tel: +61-(0)8-6151-0740
Mobile: 0414-232-267
Mailing address:
Harry Perkins Institute of Medical Research, QEII Medical Centre,
Nedlands, Western Australia 6009
Researchers at the University of Newcastle would like to invite
you to complete a survey exploring your experience of being a
parent of a child with a developmental disability. In particular,
we are interested in how cultural factors may or may not affect
your experience. We are also particularly interested in the
positive and the negative experiences that you may have had and how
this has affected you in your day-to-day life.
If you are interested in participating, click on the link below.
It will take you to our website where you can read more about the
study before deciding if you would like to complete it or not. On
the webpage you can also find a link to the survey. http://findlabstudy.wixsite.com/findlabstudy
The presence of an advertisement for a research project does not
represent an endorsement by GSNV of that research. GSNV assumes no
responsibility for the quality or conduct of research by
other agencies or organisations. GSNV urges you
to consider the benefits and consequences of taking part
in any research study, and to contact the appropriate researchers
should you have any questions or concerns.