The Sibling Project

Here are the ways siblings can get involved:

1)    Our Sibling Advisory Panel (and our young Sibling Scientists!)

2)    Online survey (coming soon!)

3)    Participating in a live summit with other siblings

4)    Visual Voices (coming soon!)

5)    Eye-Tracking Study.

1. The Sibling Advisory Panel:

By sharing your own experiences, you will be able to guide and advise on the development of our study methods and materials. We want you to tell us exactly what you think, and even more importantly, tell us how to make our ideas better.

Please note, we are not looking for more Advisors at the moment, but we would love you to express your interest in becoming part of our study at a later date here.

Parents of children with a developmental disability, we also need your advice and feedback on our ideas and research methods. If you are interested in a parent advisory role, please get in contact with us here.

2. Online survey:

Our online survey asks questions about wellbeing and family life, and gives an opportunity for reflections and wishes.  There will be a parent-assisted survey and a sibling alone survey for all ages.

If you are interested, please submit a form here to be notified when the survey launches!

3. Summit:

We are holding online summits for groups of young siblings to come together. The summits will be a personal experience to understand sibling lives, home and school experiences, relationships between siblings, and what siblings think is important for us to research to help them in the future.

If you are interested, email us here.

4. Visual Voices:

A first of its kind special project will be launched soon, giving siblings the chance to express their dreams, experiences and inspiration via creative outlets including drawing, photographing, and writing stories.

If you are interested, email us here.

5. Eye-Tracking:

We also have a special opportunity available to children ages 7-12 living in Perth. You can participate in our new ground-breaking eye-tracking research! You can either come in to Telethon Kids Institute or we can come to your school. To read more about this project and register your interest please click here. We encourage you to share this project with your friends, family and school.

Keep Informed! New opportunities are posted frequently.

You can opt-in here to receive updates about the outcomes of our research projects.

We are also seeking the input of: 1) health, education and disability support agencies, 2) policy change agents in government, and 3) online support groups or networks. If any of these apply to you, please register your interest by visiting this link or emailing us.

Your responses will help shape ideas to develop support systems for siblings. You will be on the frontline of our research to make it real and relevant.

The Sibling  Project online survey will be available soon. The survey asks questions about your wellbeing, quality of life, relationships, and unique experiences.

The survey will take about 30 minutes to complete. It can be completed online at a time and location that is convenient to you. It is also available on your mobile phone if you're on the go! Register your interest here (launching soon!).

All eligible responses will be in the running to win $50, redrawn every month, plus a special gift from our raffle with a range of prizes!

Your privacy is important to us, so your survey responses will be anonymous. The information that is collected will be stored securely on our Qualtrics platform.

Watch this space!  Survey launching end of November... the count-down is on!

The Sibling Project is part of research led by a team of investigators based at Telethon Kids Institute, who have been awarded funding by the National Health and Medical Research Council (NHMRC). The Sibling Voices Project is being led by Dr Emma Glasson and A/Professor Helen Leonard and the online survey is coordinated by researcher Brittany Mann. If you have any questions or comments about this project, or would like to be a part of this innovative research, please email the team at siblings@telethonkids.org.au

Dr Emma Glasson is a Senior Research Fellow at the Telethon Kids Institute. She has led many research projects investigating the epidemiology, comorbidities, health patterns, diagnoses and management of developmental disorders, including intellectual disability, autism and genetic disorders. She has led internationally unique state and national disability research projects, including a state-wide register for autism with information on over 6,000 cases collected over 19 years, a state-wide genealogy for 2.5 million WA residents, and a national questionnaire and biometrics study on Rett syndrome. To contact her, please email: Emma.Glasson@telethonkids.org.au

A/Professor Helen Leonard has qualifications in medicine and public health. She is a Principal Research Fellow at the Telethon Kids Institute, Associate Professor at The University of Western Australia and is in receipt of an NHMRC Senior Research Fellowship. For twenty years her clinical practice primarily involved the management of children and adults with intellectual disability. She is a member of an international autism collaboration, funded by the  NIH as a “virtual and global” Autism Centre of Excellence and which has the infrastructure to undertake pooled analyses of international data comprising over 2.5 million births and nearly 34,000 cases of autism. In 1992 she established the internationally unique population-based Australian Rett Syndrome Database, in 2002 she established the International Rett Syndrome Foundation Phenotype Database, InterRett and in 2012 the International CDKL5 Disorder Database. To contact her, please email: Helen.Leonard@telethonkids.org.au

Brittany Mann is a PhD candidate and Research Assistant at Telethon Kids Institute. Her research is investigating siblings of children with neurodevelopmental disabilities. She is interested in developmental trajectories of children with autism, psychiatric illness, and rare genetic disorders such as Rett syndrome. She also has a current research focus on prevention, diagnosis and management of Fetal Alcohol Spectrum Disorder. Her future research aims to explore the neurobiology of complex neurodevelopmental and psychiatric disorders in siblings. She aims to investigate critical brain-behaviour relationships which may indicate new diagnostic markers for early identification, and treatment targets for intervention. To contact her, please email: Brittany.Mann@telethonkids.org.au

Are you a sibling looking for a safe, supportive space to connect with other siblings like you? We have a private  Facebook Group! Here, you can share your experiences, ask questions and support each other. Click here to join the group.

More resources just for you are coming soon!