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Family satisfaction following spinal fusion in Rett syndrome: a cohort study

This study evaluated sixty-one families' satisfaction following spinal fusion in girls with Rett syndrome.

Parental experiences of scoliosis management

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.

Impact of scoliosis surgery on daily living

We wanted to examine the effects of spinal fusion surgery to treat scoliosis on the functional abilities of girls and women with Rett syndrome.

Clinical guidelines for management of bone health in Rett syndrome based on expert consensus and available evidence

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

How to get active

Considering one’s own capacity, activity should be included into everyone’s daily routine to make sure these recommended levels of activity are being as closely met as possible, for everyone to secure the most benefits.

How much activity is recommended?

Each family needs to select the appropriate types and levels of activity that suit their own individual needs and circumstances.

Research on activity in Rett syndrome

Our research team have done 4 studies to find out how to increase activity in children and adults with Rett syndrome.

Caring for caregivers

When you build routines into your day to increase uptime, it doesn’t only affect the person with Rett syndrome; it affects the whole family.

ActiveRett

Staying physically active is an important part of a healthy lifestyle. ActiveRett is a dedicated resource for helping families support their child with Rett syndrome to keep active.

Meeting with families in China

Prof Helen Leonard and Dr Jenny Downs recently visited Shenzhen, China to meet Chinese families and child neurologists from the Shenzhen Children's Hospital.