While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease. ...

• 1. Telethon Kids Institute
• Our research
• Brain and Behaviour
• Development and Disability
• Child Disability

Optimal mental health in the pre-conception, pregnancy and postpartum periods is important for both maternal and infant wellbeing. Few studies, however, have focused on Indigenous women and the specific risk and protective factors that may prompt vulnerability to perinatal mental disorders in this culturally diverse population. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2020
• February 2020

Discharge against medical advice (DAMA) is a priority issue for the health system. Little is known about the factors associated with DAMA for Aboriginal and/or Torres Strait Islander (Aboriginal) children in Australia.  ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2023
• November 2023

The prevalence of stillbirth in many high income countries like Australia has remained unchanged for over 30 years. The 2018 Australian government Senate Select Committee on Stillbirth Research and Education highlighted the need for a public health campaign to encourage public conversations and increase awareness. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• July 2022

Difference in stillbirth and neonatal death rates in Western Australia (1998-2010) by maternal ethnicity ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2016
• October 2016

To determine the potential longer-term effects of maternal antenatal respiratory syncytial virus (RSV) vaccination, we examined the association between cord-blood RSV-neutralizing antibodies (RSV-NA) and RSV infections in the first 2 years of life, RSV-NA at 3 years, and respiratory health to age 5 years. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2021
• September 2021

Comparing how mast cells are “programmed” in allergic and non-allergic children at one year of age. ...

• The ORIGINS Project
• Sub-projects
• Allergy, Inflammation & Immunity

The purposes of this study were to explore what makes for a "good life" from the perspective of young adults with Down syndrome and to identify the barriers... ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2013
• November 2013

There is scant literature about the management of stillbirth and the subsequent risk of severe maternal morbidity (SMM). We aimed to assess the risk of SMM associated with stillbirths compared with live births and whether this differed by the presence of maternal comorbidities. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• September 2022

Charlotte Allan  When Perth mum Lacy Swan’s daughter Charlotte failed the newborn hearing test at 3 days of age, the medical team explained it could ...

• 1. Telethon Kids Institute
• Our research
• Research Impact
• 2022
• Collaboration