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Feasibility and Effectiveness of an Individualized 12-Week "Uptime" Participation (U-PART) Intervention in Girls and Women With Rett Syndrome

The U-PART intervention was found to be feasible and effective in the short term in girls and women with Rett Syndrome

Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy

This study used qualitative methods to explore how adolescents with Duchenne muscular dystrophy used a powered wheelchair standing device in their daily lives

Asthma

One in eight children have asthma, a chronic disease of the airways in the lungs. It results in shortness of breath, chest tightness, wheezing and coughing.

Meet the Finalists: Illuminate PitchFest 2025

We are excited to introduce ten trailblazing researchers who will be taking to the stage this February to pitch their bold and innovative ideas to our philanthropic community.

Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review

Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders. Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments. 

The development, content and response process validation of a caregiver-reported severity measure for CDKL5 deficiency disorder

CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity. 

Web-Based Self-Compassion Training to Improve the Well-Being of Youth With Chronic Medical Conditions: Randomized Controlled Trial

Up to one-third of young people live with chronic physical conditions (eg, diabetes, asthma, and autoimmune disease) that frequently involve recurrent pain, fatigue, activity limitations, stigma, and isolation.

Therapy for babies with signs of autism cuts long-term disability costs

New research evaluating the potential cost savings of a therapy for babies displaying early autism signs has predicted a three dollar return to Australia’s National Disability Insurance Scheme (NDIS) for every dollar invested in therapy.

SMS4Dads

SMS4RRdads is a digital prevention and early intervention service that will engage, screen and support expectant and new fathers experiencing or at risk of perinatal mental illness.

Uplift: Online self-compassion training for young people with chronic conditions

Amy Yael Asha Finlay-Jones Perry Parkinson BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) BPsych (Hons) MPsych (Clin) PhD BPsych (Hons