Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
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.
SWAN also does its own research. Last year we created a survey on the use and storage of genetic/genomic data and Heather presented our findings at the HGSA conference in November. Please click here to access our summary: Exploring SWAN Parents’ Perceptions of Genomic Data.
We have also collaborated with universities on several studies about the diagnostic journey for parents, gaps in government funding for SWAN families and respectful communication. We look forward to sharing the results of these studies soon.
If you have some ideas and would like to collaborate with SWAN on research, please email Heather at email@example.com.
Research Fee Update 2023
If you would like SWAN to help recruit participants for your research study, we will be charging a $100 fee in 2023 to cover administration prices. We will waive this fee for PhD and masters students. Thanks for your understanding and we look forward to supporting your research.
Respectful Communication Research
Researchers at the University of Melbourne and Murdoch Children’s Research Institute are interested in interviewing parents and carers of children with an undiagnosed or rare genetic condition living in Australia. They wish to explore families’ experiences of communication with genetic healthcare professionals.
Are you interested in a 30-60 minute interview over the phone or zoom? Please see the study flyer here and contact Lucy Burbury at firstname.lastname@example.org with any questions.
Railway Station Platform Gap Solutions Effectiveness
The gap between a railway station platform and any train represents a major hazard and risk for all passengers boarding and exiting trains. This risk is amplified for mobility device users, people with disability, the elderly and young children. The risk of slips, trips, falls, entrapment, and injury is ever present.
This project provides a fact base to recognise the problem as well as a pathway to a solution by testing proof of concept prototype/s. It is pro-posed to work closely with mobility device users and other vulnerable users, to test and assess:
This project is a combined project between La Trobe University, iMove, afdo and ACRI. For further information, please contact Erik van Vulpen at email@example.com. Please click here to access the survey.
We thank SWAN members for their participation in research. Here are some recent studies that SWAN parents/carers have contributed to:
Co-design, implementation, and evaluation of plain language genomic test reports
Gemma Brett (Genetic Counsellor at VCGS) worked with consumers to develop genomic test reports in plain language. Eight plain language genomic test report templates were developed for common genomic test outcomes in rare disease. Please click here to access the study summary. You can also see the genomic test report here.
Exploring the Journey to Genetic Services: A Qualitative
Study of Parental Perspectives of Children With Rare
Researchers at Monash Health, The University of Technology Sydney and the University of Queensland explored the diagnostic journey of parents in Queensland and Victoria. Courtney Wallingford (genetic counsellor and PhD candidate at the University of Queensland) presented the findings with a poster at the HGSA Conference in 2021. You can also find the study abstract in Twin Research and Genetics Studies. We are looking forward to seeing these results published.
Finding the gaps – Access to Australian government funding support for children with undiagnosed or rare genetic conditions
Researchers at The University of Melbourne and SWAN Australia collaborated on a study funded by the Melbourne Disability Institute. The study explored government funding gaps for families who have children with undiagnosed and rare genetic conditions to understand how to better support families. We look forward to publishing these findings soon.