What is VicCHILD?
VicCHILD is the 'Victorian Childhood Hearing Impairment Longitudinal Databank'. It's a Victorian register and research databank of children born with a permanent hearing loss. VicCHILD collects different types of information from children and their families, to create a unique resource for advancing research in hearing loss.
VicCHILD follows strict ethical guidelines to protect the information collected about children and their families. The VicCHILD project has been approved by The Royal Children's Hospital Human Research and Ethics Committee and all information is stored confidentially.
Why is VicCHILD important?
Each year in Victoria, around 110 babies are born with a permanent hearing loss. As these children grow, they can face challenges in things that come naturally to others like language and learning, and their quality of life.
The VicCHILD register can help us understand why some children with a hearing loss do so well, while others experience greater difficulties. This important 'bank' of information could improve interventions and ultimately the lives of families with children with hearing loss.
How will VicCHILD help children, families and researchers?
VicCHILD is working to improve the lives of children born with a hearing loss by unlocking the secrets to congenital hearing loss. The VicCHILD project aims to:
- advance research about the causes and outcomes of childhood hearing loss.
- inform the development of new treatments and interventions that help children with hearing loss reach their full potential in life.
- provide a unique resource for research collaboration around Australia and internationally.
What information does VicCHILD collect?
With parent permission, VicCHILD collects and stores a range of information about children (and their families) who have permanent hearing loss.
The information is sourced directly from children and parents, as well as from health and education services that already hold information for Victorian children. Parents can choose to provide all, or just parts, of the information sought by VicCHILD.
From children and parents directly, VicCHILD collects:
- Information about the child's health and development via a parent questionnaire and simple child assessments
- A simple cheek swab and/or spit pot
In addition, VicCHILD asks parents for permission to access information that has already been collected on their child, including:
- Data from health and education services and organisations, such as Australian Hearing Data, and later their results in school (NAPLAN, VCE/VCAL).
- Biological samples: maternal serum (collected during pregnancy) and the newborn screening card (the heel prick performed when the child is born)
How often is information collected?
VicCHILD collects a small amount of information from families on approximately four occasions, over a number of years:
- When the family first enrols in VicCHILD. This is normally at the age of 4-8 months, however, many families join us when their child is older. There is no age limit on when children and families can join.
- When the child enters primary school.
- When the child begins high school.
- At the end of high school.
Who participates in VicCHILD?
All Victorian children born with a permanent hearing loss can join the VicCHILD register. VicCHILD is contacting all families who have a child with permanent hearing loss (born after 1st January 2005).
VicCHILD is also contacting the families of those children diagnosed with a hearing loss prior to January 2012, including:
- Families whose child was born between 2005-2011 and diagnosed with a permanent hearing loss (with hearing screened through the Victorian Infant Hearing Screening Program).
- Children and their families who took part in the SCOUT project (Statewide Comparison of Outcomes of Hearing Loss), and
- Children (now young adults) and their families who took part in the CHIVOS project (Children with Hearing Impairment in Victoria Outcomes Study)
How can families help VicCHILD?
Families can help our researchers learn more about childhood hearing loss by joining the VicCHILD register.
If you have not been contacted by VicCHILD, and you have a child who was born with a permanent hearing loss (since 1st January 2005), your child and family may be eligible to join VicCHILD. If you would like to find out more please contact VicCHILD by calling (03) 9345 4215 or email firstname.lastname@example.org