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Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences

People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.

Modelling vitamin D food fortification among Aboriginal and Torres Strait Islander peoples in Australia

Low vitamin D intake and prevalence of serum 25-hydroxyvitamin D concentration <50 nmol/L among Aboriginal and Torres Strait Islander peoples highlight a need for public health strategies to improve vitamin D status. Since few foods contain naturally occurring vitamin D, food fortification could be a suitable strategy. We aimed to model vitamin D food fortification scenarios among Aboriginal and Torres Strait Islander peoples.

Hospital and emergency department discharge against medical advice in Western Australian Aboriginal children aged 0–4 years from 2002 to 2018: A cohort study

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. 

Fetal alcohol spectrum disorder and Aboriginal and Torres Strait Islander men: A discussion to be had

Fetal alcohol spectrum disorder (FASD) is a lifelong disability of varying severity that occurs among individuals prenatally exposed to alcohol. Among Aboriginal and Torres Strait Islander (Indigenous) Australians, the effects of colonisation and ongoing racism could increase the risk of alcohol consumption during pregnancy.

Nonchromosomal birth defects and risk of childhood acute leukemia: An assessment in 15 000 leukemia cases and 46 000 controls from the Childhood Cancer and Leukemia International Consortium

Although recent studies have demonstrated associations between nonchromosomal birth defects and several pediatric cancers, less is known about their role on childhood leukemia susceptibility. Using data from the Childhood Cancer and Leukemia International Consortium, we evaluated associations between nonchromosomal birth defects and childhood leukemia.

Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Siblings of children with intellectual disability have unique family experiences, varying by type of disability.

Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together

Working with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes. 

Assessing The Validity Of A Culturally Modified Drinking Motives Questionnaire For Use In Aboriginal Communities

Alcohol related harms disproportionately affect Aboriginal people in Australia. Motives to drink have been identified as the most proximal factor to alcohol consumption.The aim of this study is to assess the validity of a culturally modified Drinking Motives Questionnaire-Revised (DMQ-R) (Cooper, 1994) with Aboriginal participants. The study was cross sectional, utilising data collected via face-to-face surveys with a sample of adult Aboriginal participants.

Total joint replacement may be a valuable treatment for Aboriginal and Torres Strait Islander people with osteoarthritis, but uptake is low

Despite bearing a higher burden of osteoarthritis, little research has examined disparities in the access, utilisation and surgical outcomes associated with total joint replacement (TJR) among Aboriginal and Torres Strait Islander people.

Invasive Infections Caused by Lancefield Groups C/G and A Streptococcus, Western Australia, Australia, 2000–2018

Epidemiologic data on invasive group C/G Streptococcus (iGCGS) infections are sparse internationally. Linked population-level hospital, pathology, and death data were used to describe the disease burden in Western Australia, Australia, during 2000-2018 compared with that of invasive group A Streptococcus (GAS, Streptococcus pyogenes) infections.