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Funded by the International Rett Syndrome Foundation, this international online database examines the clinical features and genetic characteristics.

AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians

We aim to ensure that high quality outcome measures are available to evaluate treatments and services for children with disability rigorously. We aim to translate our research into resources to support families, carers and clinicians.

Regression, including the loss of previously learned skills, such as hand function and communication skills, is one of the most suggestive features of Rett synd

We also wanted to find out whether any particular behaviours were associated with any specific mutation types.

Through InterRett we collect information on individuals with Rett syndrome on a global level. If you are a participant you can complete your questionnaire here.

Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.

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

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The internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.

We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.