Opportunity to participate in research

6, Sep 2017

GaRDN is disseminating this on behalf of the researchers and more information about the project is below.

http://www.surveygizmo.com/s3/3632348/families-living-with-rare-diseases

 

Dear Families living with a rare disease

Prof Nigel LAING AO, UWA is conducting a research project exploring the potential for implementation of a carrier screening program for severe/lethal recessive diseases. Part of the project is a survey about preconception carrier screening among families living with rare diseases.

The online survey 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 survey should take approximately 15 mins to complete and you can complete it on any platform including laptops, desktop, tablets or phones. Your participation will contribute toward identifying attitudes and opinions about 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 survey is strictly confidential and anonymous. In order to ensure anonymity, 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.

For more information about the research and how your participation is important to our study, please visit: https://www.perkins.org.au/our-research/divisions/molecular-medicine-and-ageing/neurogenetic-diseases/online-survey-on-severe-recessive-diseases/

Please feel free to disseminate to other families living with rare diseases that you may know.

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

OR

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