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Showing results for "clinical trials"

Development of a video-based evaluation tool in Rett syndrome

This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT).

The role of family and maternal factors in childhood obesity

The aim of this study was to investigate the relationship between a child's weight and a broad range of family and maternal factors.

Longitudinal trajectory of gross motor skills in school-aged children with Rett syndrome

In children with Rett syndrome, this study aimed to (1) describe gross motor skill trajectories; and (2) analyse the influences of genetic variant and comorbidities. This was a prospective longitudinal study conducted at the Danish National Center for Rett Syndrome 2008 to 2022. The Rett Syndrome Gross Motor Scale (RSGMS) was administered, and clinical data collected at each visit.

Access to Oral Healthcare in Individuals With Rett Syndrome: A Qualitative Study of Parent Perspectives

Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of general populations with IDD but these may not reflect the barriers experienced by individuals with rare disorders such as Rett syndrome.

Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content Analysis

No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.

A Small Device May Deliver King-Sized Solutions for Patients With an Exacerbation of Cystic Fibrosis

The aim is to examine whether using a portable spring-infusor device to deliver antibiotics compared with a standard infusion pump (SIP) translated to (i) improve health outcomes, (ii) reduce the length of stay (LoS), and (iii) reduce cost for treatment of exacerbations of cystic fibrosis.

Self-Compassion in University Students With ADHD: A Qualitative Exploration

This study explored the lived experience of university students with attention-deficit hyperactivity disorder (ADHD) and identified factors that help or hinder their capacity for self-compassion in higher education. Fourteen university students with ADHD aged 18–25 participated in individual semi-structured interviews exploring experiences of self-compassion in academic contexts.

Comparing education with and without indirect contact to reduce stigma towards youth at-risk for psychosis

Stigma towards individuals with mental health concerns is a global issue, including among young people at ultra-high risk (UHR) for psychosis. This study compared two written anti-stigma resources: (a) Education and (b) Lived Experience + Education, among young adults and parents/caregivers.

New funding targets diabetes and heart disease health service gaps

Researchers will work with Aboriginal & Torres Strait Islander women in SA to devise better ways to care for women at risk of pregnancy complications caused by diabetes and cardiovascular disease.

Can telehealth increase physical activity in individuals with Rett syndrome? A multicentre randomized controlled trial

To evaluate the effects of a physical activity programme on sedentary behaviour and physical activity in ambulant individuals with Rett syndrome.