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Current Research News

Research study for families living with rare diseases

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

 

Do you have a child with a developmental disability?


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

 

Latest MCRI Genetic Research

For the latest news about the Murdoch Children's Hospital's latest research into genetic conditions, visit their website.

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