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Home » News and Research » Looking for participants

Looking for participants

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

 

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

 

Fathers of a child with a rare disease needed!

If you are a parent, mother or father, of a child with a rare disease that is 18 years or under, I invite you to complete a short survey aimed at identifying your supportive care needs.

The purpose of my research is to better understand the support needs of parents caring for a child diagnosed with a rare disease (irrespective of what disease your child has), and to develop a tool for use by health professionals to assist them in identifying parental support needs. The information obtained should eventually lead to more appropriate individualised supportive care for parents.

Parents of children with a rare disease play a vital role in the daily lives of their children with a rare disease. They carry significant daily responsibilities of care. Yet, very little is actually known about their supportive care needs. My research aims to give parents of children with rare diseases an opportunity to have their voices heard and their needs recognized with the ultimate goal to improve the way health providers identify needs, tailor support and plan and implement services within the rare disease community.

So far, I have received over 150 completed surveys. Of these, majority (96%) have been mothers. So, I strongly encourage fathers to also complete the survey, so that my research can represent the support needs of both mothers and fathers.

I very much appreciate your time in completing this short survey. The following link will take you directly to the survey: https://www.surveymonkey.com/s/3NYKPH6. It will take about 20 minutes of your time to complete.

 

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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