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News and Research

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

 

The Genioz study

The Genioz study is exploring Australians' awareness of new genetic science.Traditionally, scientists have been able to look at people's genetic makeup by testing one gene at a time. Now, we can test all of our many thousands of genes at the same time, and generate our own personal genetic profile to give healthy people info about their own genetic makeup! Called 'personal genomics', this broad group of genetic tests can be used in many ways, including ancestry, paternity, sporting ability, and health.

We want to learn what people think about the topic - it doesn't matter if you feel you don't know anything about this area already; your opinions and views are valuable to us and our research partners.

Genioz is collecting data via an online survey, open now until the end of 2016. Anyone, regardless of their level of knowledge, can participate. Have your say here: www.genioz.net.au/page/survey

 

Invitation to participate in cystic fibrosis research

We are looking for people aged 18-25 years with a diagnosis of cystic fibrosis to participate in a research study about their past experiences with cystic fibrosis.  Participation would involve a single face- to- face or phone interview with the researcher, a master of genetic counselling student. The aim is to provide a better understanding of young peoples' information needs, and to direct the guidance and training for healthcare professionals in meeting these needs.

If you are interested in participating, or want to know more, please contact:

Emily Allen (investigator) emilya1@student.unimelb.edu.au or by phone at 0476 889 650

If you are unable to make contact with Emily, please contact:

Lynn Gillam (supervisor) Lynn.Gillam@rch.org.au or by phone at 0417 536 785.

 

Ever wondered if too much sitting affects your brain?

Researchers are looking for healthy people aged between 55-80 with a BMI between 25 and 40 (kg/m2 ). Main exclusion criteria are smoking, regularly active (defined as more than 150 minutes of moderate intensity exercise per week), diagnosed diabetes, dementia, cancer (in the last 5 years), peri menopause or menopause. Eligibility criteria will be determined via a phone screening questionnaire.

The study involves 4 visits to Baker IDI

  • 1 familiarisation visit (2 hours)
  • 3 experimental conditions (8 hours each, breakfast and lunch provided)

For your participation you will receive:

FREE cutting-edge and individualised reports and advice from medical research professionals about:

  • Your current biological health status
  • How brain function changes over the course of a normal day
  • How you can improve your health & reduce the risk of chronic disease
  • On top of all this, you will also be reimbursed $393 for your time along with FREE meals and parking during and around the trials.

For further information please contact Michael Wheeler or Ian Mullis.

Michael- Tel: (03) 8532 1898 or michael.wheeler@bakeridi.edu.au

Ian- Tel: (03) 8532 1932 or email: ian.mullis@bakeridi.edu.au

Also see the flyer.

 

Parents of children with high care needs

Are you a parent of a child (including adult children) affected by a genetic condition that requires high-level care in order to meet their basic daily needs? If so, the research team from the Faculty of Education and Social Work, University of Sydney, would love to hear from you! The team are interested in the relationships that parents have with the many services they are in contact with as a result of their caring role (for example health, education, disability, finance, employment). The study is open to parents located anywhere in Australia. Interpreters can be arranged if needed.
Contact: Pam Joseph 0435 532 074  pjos3628@uni.sydney.edu.au

 

Online survey for parents of children with genetic conditions

Are you a parent or caregiver to a child with a neurogenetic condition such as 22q11.2 deletion syndrome, Prader-Willi syndrome, Down syndrome, an as yet undiagnosed syndrome or other neurogenetic syndromes?

Following on from an earlier study, the University of Newcastle would like to further understand how your child has impacted your life and how you have coped. You can do this study even if you participated in the Disclosure study in 2012/2013. To read more, or complete the survey click the link below: www.wix.com/c3094005/geneticdisorders

 

Genetics in Primary Care

Have you ever talked to your GP about genetics? Through the MCRI new research is being conducted into understanding how genetics is part of primary care, and changes that could be made in the future.

Participation includes taking part in a 30-60 minute interview, and the possibility to be involved in focus groups if you are interested.

Participants will be given a $20 voucher as a token of appreciation for their time.

If you would like more information, please contact Belinda McClaren by email belinda.mcclaren@mcri.edu.au or phone (03) 8341 6331.

This study has ethics approval from the University of Melbourne: HREC 1034301.1

 

Disclaimer:

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. 

 

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