Research Projects

Do you want to contribute to research?

SWAN is sometimes approached by clinicians, researchers, PhD students, Masters of Genetic Counselling students, and psychology students who are seeking participants for their research projects. Research opportunities are shared in our newsletter and you can find the details to more information on current research projects below.

We Want to Know About Paid Participation in Consumer Engagement

The Genetic Support Network of Victoria welcomes your input as a member of the genetic, undiagnosed and rare disease community in developing a transparent policy pertaining to payment, or non-payment, for participation in projects involving people living with, or caring for someone with a rare disease.

Your feedback in this survey will guide the development of a position statement that will be the foundation for fairness and integrity when working alongside our friends in the rare disease sector in future projects. The questions are deigned to gain an insight into the expectation of the rare disease patient and carer population so that we can engage them in our projects authentically and respectfully.

If you have any questions relating to paid payment for consumers, please contact Isaac Hockey, Project and Policy Assistant at [email protected]

Click here to participate.

Expressions of interest: Participate in research interview about paediatricians ordering genetic/genomic tests

Melbourne Genomics is seeking expressions of interest from parents to take part in a research interview for a study which is investigating the use of genomic sequencing tests by paediatricians in Victoria. The team are interested in talking to parents to hear their opinions on their child’s paediatrician’s involvement in their child’s health care which has involved genetic testing. For example, this might have been a genetic test, an exome or a whole genome test, a microarray or a panel test.

Involvement would be a telephone interview for up to 60 minutes. You will receive a $50 gift voucher as a token of appreciation for your time and opinions. The interview will ask questions about the advantages or disadvantages that may result when a paediatrician orders a genetic test, and comparing this to experiences of when genetic testing is organised by a genetic service (clinical geneticist, genetic counsellor).

You are eligible for interview if: your child has previously had genetic testing before the age of 10 because your doctors suspected a genetic cause of your child’s developmental delay or health concerns, and your child has a paediatrician involved in their care (your child might also have other health professionals involved in their care). Only families living in Victoria can participate in this study. A small number of interview places are available so to check eligibility and express an interest, please contact the researcher, Belinda McClaren on [email protected].

Expressions of interest are open now and close 30th June 2022. Following the interview you will have the opportunity to be involved in a workshop at a later stage in which the opinions and views gathered in these interviews are discussed to ultimately develop potential strategies that could be used to improve the way genomic tests are ordered in paediatric settings.

Involve Australia: public perceptions of health research

This survey is being run by Involve Australia. Involve Australia is a national community-led project coordinated by Australian Genomics. We aim to promote better community involvement in genomics research.

In this project, we want to understand what people think about getting involved in health research. With your help, we can get a better understanding of how researchers can connect with people in the community to make sure that their work makes a difference to people like you.

This survey will take about ten minutes to complete.

We are collecting:

General information about you (we are not collecting personal information such as names or addresses)
Information on whether you have been involved in health research
Information on what would get you to participate as a community advisor on a research study or what would stop you from participating in the future.

Please click here for the link to the survey. This survey will close on the 1st of July 2022.

This survey has been ethically approved by the Royal Children’s Hospital Human Research Ethics Committee. If you would like more information on Involve Australia or Australian Genomics, please visit our website. Should you have any questions about this survey please contact the Involve Australia Coordinator, Keri Finlay at [email protected].

Dementia-CONNECT: Connecting the dots in Childhood Dementia disorders

Researchers at The Sydney Children’s Hospital Network (SCHN) are looking for volunteers to help understand the symptoms of childhood dementia.

You can participate if you are an individual or caregiver of an individual who has been diagnosed with a genetic condition associated with childhood dementia. Participation involves a 40 minute survey (either hard copy or online) that assesses several characteristics of the individual with childhood dementia. It also asks questions about the impact that childhood dementia has on caregivers. To learn more about the research study or to participate, please see the study advertisement or contact Jason Djafar at [email protected].

How inclusive is your and your child’s experience of early childhood education?

Olivia Penna is a PhD candidate at Melbourne Graduate School of Education. Olivia is recruiting parents or caregivers of children with disabilities to reflect on their child’s experience of inclusion in early education.

Participation involves a 45 minute interview. For more information, please see the study advertisement or contact Olivia at [email protected]

Consumer perspectives needed to improve emergency care

Monash University researchers are recruiting consumers who are parents or carers of children (0-17 years old), to assist in designing research that will be performed in paediatric Emergency Departments across Australia. Your role will be to provide a critical consumer perspective into research investigating how parents or caregivers can have a more active role in their child’s healthcare by helping to earlier identify and alert clinical staff to when the child may be getting worse. The research is planned to occur across a number of major hospitals in Australia and New Zealand.

For more detailed information, please read the study advertisement. If you are interested, write an expression of interest, and email it to: [email protected]

Supporting families through genomic testing

Parents or legal guardians of children who had genomic testing since January 2017 are invited to participate in a research study called “Supporting families through genomic testing”. The study aims to understand how genetic services support families of children with rare conditions in Australia. The study involves completing a survey about your experiences with genetics services, including preparing for testing, receiving your child’s genomics results, and any follow-up care provided by genetics services in Australia. The project will help identify what supports are needed and preferred by families. Survey results will be reported back to the study team in an anonymised way to help improve the genomic testing process and genetics services for families going through similar experiences. More information about the study is available at the start of the survey link.

The survey will take approximately 20 minutes to complete and can be completed online by the survey link. This project is being carried out by the Murdoch Children’s Research Institute (MCRI). The results of this research will be used by Mr George Booker as a partial requirement of the Master of Genetic Counselling degree at the University of Melbourne.

For further information about this study, or to ask for a paper copy of the survey, please contact the research supervisors: Michelle de Silva on 03 9936 6109 or [email protected], Elly Lynch on 03 9936 6315 or [email protected] or Anita Gorrie on 03 9594 2026 or [email protected]

Research Study Investigating Neurofibromatosis 1 (NF1)

Research participants wanted:

Royal North Shore Hospital’s Department of Clinical Genetics is conducting a research study on health concerns of people with NF1, in particular cancer worry, anxiety and quality of life issues related to the presence of cutaneous neurofibromas. They’re seeking people with a diagnosis of NF1 along with participants who don’t have NF1 to act as a control group. For more information, please see the attached information sheet. To get involved click here: bit.ly/NFconcerns

If you require more information about the study, please email Dr Jane Fleming at [email protected] or call 02 9463 1727.