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One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.

News & Events

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This study used information from international Rett syndrome database to investigate the relationship between clinical characteristics and different mutations.

Using information from the Australian Rett Syndrome database, we coded symptoms according to severity scales and grouped by type and location of mutation.

Therefore, we wanted to compare the features of girls and women with a C-terminal deletion with those with other MECP2 mutations.

We investigated the occurrence of altered pain sensitivity as well as how these altered reactions to pain were observed during daily life.

We compared information on the life expectancy of Dr Rett's original group in 1966 with information in the Australian Rett Syndrome Database.

We investigated the occurrence of different types of hand stereotypies and whether they were more frequent in one hand or the other.

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Researchers will be asking random households across metropolitan Perth to undertake COVID tests to reveal how much undetected infection is in the community.

In order to help doctors and families reduce the risk of fractures, we developed clinical guidelines for managing bone health in Rett syndrome.

Research

This study used qualitative methods to investigate the regaining of mobility in 12 months following fractures in Rett syndrome and parent caregiver experiences.

Research

Gastrostomy assisted the management of feeding difficulties and poor weight gain, and was acceptable to families

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A study of ORIGINS families has revealed a positive aspect to the COVID pandemic, with families found to benefit from the extra time together during lockdowns and mobile devices proving useful for helping them stay in touch with extended family and friends and for activities such as online classes.

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The DETECT Schools program is underway, with swabs taken at 13 of the participating schools across Western Australia. No asymptomatic COVID-19 has been detected to date.

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As the world waits for a COVID-19 vaccine Perth researchers are getting one step ahead – embarking on a new study designed to prepare parents and government for a potential Australia-wide vaccination program.

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An international research collaboration, including The Kids Research Institute Australia infectious disease specialist Tobias Kollmann, has shown that the antiviral drug Interferon can speed up the recovery of COVID-19 patients.

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For families with a child with disability, this involves many extra care duties especially if their child has high and complex needs.

Research

Coronavirus disease 2019 (COVID-19) is an extremely contagious illness caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Early disease recognition of COVID-19 is crucial not only for prompt diagnosis and treatment of the patients, but also for effective public health surveillance and response.

Research

Following the end of winter, there has been a persistent absence of severe acute respiratory syndrome coronavirus 2 community transmission and no increase in influenza detections. Limited physical distancing measures have remained in place, with largely no restrictions on gathering sizes and no mandate for wearing masks.