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Current Research News

Genetic Information Needs of People Who Have Been Adopted: Adoptee Perspectives

We are currently conducting a research project looking into the experiences of people who have been adopted in relation to genetic information. This research project is being conducted as part of a minor thesis for the Masters of Genetic counselling by Tiffany O'Brien.

We would like to invite members of the public who have been adopted to participate in this study. Participation in this study will involve an interview which will take approximately one hour. In this interview we will be asking about the experiences and insights of people who have been adopted in relation to family health history information and genetics.

Through this research we hope to gain some understanding into what people who have been adopted know about their genetic information and what they would like to know. We hope that this research can be published and will help genetic health professionals assist people who have been adopted.

Participation is the study is completely voluntary. Interviews will be conducted at a time that is most convenient for participants. Interviews can be done face-to-face at the Royal Children Hospital or over the telephone at a pre-arranged time. The information that is collected will be used only for the purposes of the research project.

The responses will be de-identified and only the interviewer will have access to identifiable information. This information will be kept at the Genetic Support Network of Victoria (GSNV) for a period of 5 years from the last publication and will then be destroyed. The study has been approved by the Human Research Ethics committee of the University of Melbourne.

If you would like to participate in this study or would like further information, please contact the researchers by ph: (03) 8341 6315 (GSNV) or email: tiffanyo@student.unimelb.edu.au

 

The researchers involved in this study are:

Keri Pereira (Prinicipal Researcher)

Genetic Support and Education Co-ordinator

Genetic Support Network of Victoria

 

Dr Jan Hodgson (Responsible Researcher)

Co-ordinator of Master of Genetic Counselling

University of Melbourne

 

Margaret Sahhar (Co-Researcher)

Clinical Associate

Victorian Clinical Genetics Services

 

Tiffany O'Brien (Student Researcher)

Master of Genetic Counselling Student

University of Melbourne

 

GSNV Survey

We would like to invite you to join a psychosocial study:'An evaluation of the Genetic Support Network of Victoria: A mixed methods participatory approach'.

We are sending you this information because you have most likely utilised GSNV services within the past three years or referred a patient to the Network. We would like to learn more about your experiences with the GSNV, including your evaluations of the services received. The survey is also an opportunity to share your thoughts about how a genetics support service should operate in the community.

To gain this important insight, we are inviting 250 individuals, to participate in ananonymousonline survey (also available in hardcopy and posted if preferred) that will investigate information and support needs, satisfaction with the GSNV and beliefs and attitudes toward the Network. The results will be used to enhance the appropriateness and utility of GSNV services and will provide crucial data to inform the development of genetic support structures elsewhere in Australia.

The survey link contains a participant information statement and consent form providing further information on the project and your potential involvement. If are interested in learning more about the study and/or participating please click this link:

https://redcap.mcri.edu.au/surveys/?s=T9H88AK4RF

Another option is to reply to this email with your postal address and a hardcopy version of the survey will be sent to you with a reply-paid envelope. If you do not wish to participate or be contacted again about this study, please advise either myself or any member of the research team before 9th February 2017. If we do not hear from you by this date, we will contact you to confirm your interest in the study.

The online survey will remain active until 2nd March 2017. The survey data will be analysed and the quantitative findings will be presented in an aggregate format.

The Human Research Ethics Committee at the Royal Childrens Hospital has approved this study. 

 

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

 

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

 

Potocki-Lupski syndrome online survey

Researchers at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham are conducting a study, which aims to investigate the behaviours may be associated with Potocki-Lupski syndrome.  Researchers are inviting parents/carers of children and adults with Potocki-Lupski syndrome to complete an online survey about the health, mood, sociability, and repetitive and challenging behaviours shown by the person they care for, as well as parent/carer well-being. Please see the research information attached, or use the following link to access the information sheet and online survey: http://tinyurl.com/oczeebd (password: cerebra).

 

Environment in the Womb

A groundbreaking study by Murdoch Childrens Research Institute has shown unequivocally for the first time that the environment experienced in the womb may have a greater effect on our future health than previously thought - and more of an effect than our DNA and the health and lifestyle of our mothers while pregnant.

Researchers Drs Jeff Craig and Richard Saffery, from Murdoch Childrens said the study showed for the first time on a genome-wide scale that identical twins, which share the same DNA sequence, can have different epigenetics at birth, which further highlights the importance of the intrauterine environment in shaping the neonatal epigenome.

"Importantly, this has potential to identify and track disease risk early in life or even to modify risk through specific environment or dietary intervention.  Knowing the result for each of us at birth could help predict and better manage our future health." 

View Full Article


More Research into Genetic Testing in Children is Needed

Researchers from Murdoch Childrens Research Institute are calling for more research into genetic testing in children, after a 20 year standstill in the ethical debate.

This ethical debate stems from issues that may arise after predictive genetic testing, such as "testing can have a negative effect on family relationships".

Cara Mand, from the Institute, is advocating for a reform in genetic testing of minors by "systematically collect[ing] practical edvidence to test the claims regarding negative consquences".

View Full Article

 

Successful Genetic Testing in Schools

MCRI researchers have recently published a study online in the European Journal of Human Genetics, in which genetic screening was offered to year 10 and 11 students.  

Haemochromatosis causes the body to absorb more iron than usual from food and is one of the most common hereditary diseases. Untreated the condition can cause liver cirrhosis, liver cancer, diabetes and heart damage.  Symptoms are entirely preventable by maintaining body iron in the normal range through blood donation. 

Lead researcher, Professor Martin Delatycki said "Our study showed genetic testing in schools for preventable disease was beneficial and can be offered in schools in a way that results in minimal harm for those at high risk of disease."

View Full Article

 

Fresh Hope of Diagnosis for Mitochondrial Conditions

Patients with serious and potentially fatal genetic conditions have been given new hope of receiving a diagnosis after researchers successfully trialled next generation sequencing technology.

Researchers at Murdoch Childrens Research Institute and the Broad Institute of Harvard & MIT trialled gene sequencing technology, which can sequence thousands of genes at the same time, with the aim of determining its ability to be used in a clinical setting as a diagnostic tool to identify mitochondrial disease and other genetic conditions.

"Having a quick and simple test to diagnose mitochondrial disease would have saved much distress and despair.  However, while diagnosis may provide considerable relief and resolution for patients and their families, there is still no targeted treatment and no cure, so continued research is vital."

View Full Article

 

Revolutionary Fragile X Screening and Diagnosis

Researchers from Murdoch Childrens Research Institute have developed an innovative new test that could revolutionise the way Fragile X syndrome is screened and diagnosed.

The Murdoch Childrens test uses a DNA region that was previously thought to have no function. Researchers say the new technology could be used as an early detection test for both male and females, and could be included in newborn screening tests, leading to improved quality of life for thousands of patients and their families.

View Full Article

For information and support about Fragile X, visit Fragile X Association of Australia.

 

Kawasaki Genes Discovered

The mystery of a poorly understood and serious childhood condition - Kawasaki Disease - is a step closer to being solved after a team of international researchers, including from Murdoch Childrens Research Institute, identified two genes that are important in determining who develops Kawasaki disease.

The study found that children who have had Kawasaki disease have naturally occurring variation in two key genes involved in the immune response.  The findings, which are published today in the leading scientific journal Nature Genetics,could help revolutionise diagnosis and treatment of the disease. 

View Full Article.

 

Huntington's Disease

A new study lead by the MCRI has found that an active lifestyle may delay the onset of Huntington's disease.

Researchers found that people with a genetic predisposition to Huntington's disease whose daily activities included a high level of passive activities had on average a four year earlier onset than those who lead a less passive lifestyle.

This discovery offers those at risk the opportunity to potentially delay the disease onset through alteration of lifestyle.

View Full Article.

If you would like more information about Huntington's disease, visit Huntington's Victoria.

 

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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