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International CDKL5 Disorder DatabaseHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763
Research
Caregivers' Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online SurveyCyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) is an ultrarare genetic condition causing developmental epileptic encephalopathy characterized by seizures and motor and intellectual disabilities. No disease-modifying therapies are available, and treatments focus mainly on symptom management to improve quality of life.
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Indigenous Australian perspectives on the perinatal period: Social well-being, culture and early infant attachmentsAlthough social factors and culture are significant determinants of health in Aboriginal and Torres Strait Islander peoples, little is known academically about key interpersonal and social experiences of this population during the perinatal period, or how early attachments are formed through culture. This study addressed this gap in the literature.
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Health and climate change MJA–Lancet Countdown report: Australia gets another failing grade in 2020 but shows signs of progressAt the end of 2019 and into 2020, catastrophic fires in Australia consumed homes, lives, wildlife, and land. Just as the fires subsided, Australia, like the rest of the world, faced another emergency—the COVID-19 pandemic. It is instructive to reflect on lessons from the health disasters of the past year. Following publication of the Lancet Countdown on Health and Climate Change, the Medical Journal of Australia (MJA)–Lancet Australian Countdown was published in December, 2020. This annual report on health and climate change in Australia is in its third year and comprises the efforts of five Australian institutions, in collaboration with University College London, UK, facilitated by a partnership between The Lancet and the MJA.
News & Events
$1.2million in funding secured for two innovative projectsThe Kids researchers are collaborating on two major projects that today received $1.2million in funding from MTPConnect.
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Retrospective Case-Control Study of 2017 G2P[4] Rotavirus Epidemic in Rural and Remote AustraliaA widespread G2P[4] rotavirus epidemic in rural and remote Australia provided an opportunity to evaluate the performance of Rotarix and RotaTeq rotavirus vaccines, ten years after their incorporation into Australia's National Immunisation Program.
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BEAT-CF (Bayesian Evidence Adaptive Treatment for people with Cystic Fibrosis): description of a prospective cohort for nested studies in cystic fibrosisDespite recent improvements in treatment modalities for cystic fibrosis (CF), there is currently limited evidence and a lack of consensus regarding optimal treatment strategies for the different aspects of CF, including pulmonary exacerbations (PEx). We aimed to establish a prospective cohort of people with CF (pwCF) to evaluate alternative approaches to managing CF in the era of modulator therapies.
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Towards the establishment of the PREVAIL Centre, a Centre for PREcision in VAccine ImpLmentation at The Kids Research Institute AustraliaPat Tom Holt Snelling PhD, DSc, FRCPath, FRCPI, FAA BMBS DTMH GDipClinEpid PhD FRACP Emeritus Honorary Researcher Head, Infectious Disease
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Mapping changes in immune cell populations in gestational tissues over the course of pregnancyThis is a strategic “pilot” project in which we are seeking basic information on the immune cell content of gestational tissues.
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Looking after bubba for all our mob: Aboriginal and Torres Strait Islander community experiences and perceptions of stillbirthThe stillbirth rate among Aboriginal and Torres Strait Islander women and communities in Australia is around double that of non-Indigenous women. While the development of effective prevention strategies during pregnancy and improving care following stillbirth for women and families in communities has become a national priority, there has been limited progress in stillbirth disparities. With community permission, this study aimed to gain a better understanding of community experiences, perceptions, and priorities around stillbirth.