When it comes to living with medical conditions, all people are unique. Some patients may be affected more severely, while others may adapt and thrive with the same diagnosis. Hearing loss in children is no different, as some children may excel in areas of development such as language acquisition or social skills while some children struggle, despite critical advancements in early detection and intervention. This discrepancy as to why some children surpass expectations while others lag behind is difficult for researchers to understand due to a lack of population-based prospective research, but a unique database is now filling that gap in information, helping the medical community further learn about children with hearing loss on a global scale.
The Victorian Childhood Hearing Impairment Longitudinal Databank (VicCHILD) is a longitudinal databank population-based open to every child with permanent hearing loss in Victoria, Australia that has begun collecting information in 2012. This unique database is the result of 25 years of work and research conducted by The Royal Children’s Hospital and Murdoch Children’s Research Institute (MCRI) with an aim to better understand hearing loss in children during their most vital time of development. At the end of 2018, 807 children were enrolled, contributing child assessments and their current development, parental questionnaires, and important baseline data at enrollment, two years of age, school entry, and early high school entry.
The database will have 1000 participants by 2020, making it the largest hearing databank in the world, a fact that Dr. Valerie Sung, the lead author of VicCHILD’s feature in the International Journal of Epidemiology, says will provide crucial amounts of information, “This important bank of information could improve interventions and ultimately the lives of children with hearing loss and their families. It will also act as a platform for research trials to understand the effectiveness of different interventions.”
Though early detection and intervention are occurring earlier than ever before, this does not always result in equality of outcome, an unfortunate reality Dr. Sung understands all too well. “However, early clinical diagnosis and intervention does not guarantee equality in health outcomes, with language and related outcomes of children with hearing loss remaining on average well below population means and the children’s true cognitive potential.”
Why does this happen? Sung believes this lack of understanding is due to a lack of population-based prospective research, therefore, the database was born.
With information taken during critical steps in a child’s life, the database is helping medical professionals track a child’s developmental progress and compare it to other data in the database, painting a clearer picture of why some children may excel while others experience barriers in their development. Even as some children have access to cochlear implantation, hearing aids, and early intervention services, some deaf or hard of hearing children are not reaching their potential while others exceed expectations. As the VicCHILD grows, researchers hope that the information gathered may help solve the mystery, increasing the quality of life for millions of children around the globe.