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Factors Associated With Rare Pediatric Cancer Trial Enrollment: A Report From the Children's Oncology Group Rare Tumors Committee

Over 90% of US children with cancer are treated at Children's Oncology Group (COG) centers, which seek to maximize enrollment in therapeutic and biobanking studies. Rare cancers have demonstrated lower than expected COG enrollment. We evaluated trends in COG rare cancer enrollment compared to US incidence from Surveillance, Epidemiology, and End Results (SEER) registries, examining the impact of COG therapeutic trials and Project:EveryChild, a cancer biobank/registry.

The United Nations convention on rare diseases—A framework for research prioritization

Citation: Junaid M, Downs J, Groza T, Lassmann T, Baker S, et al. The United Nations convention on rare diseases—A framework for research

Content Validation of the Communication Inventory Disability–Observer Reported CID-OR

CDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported was developed from a framework of communication derived from parent/caregiver interview data in consultation with disability and communication experts, and after reviewing concepts in existing measures.

Confident and Trustworthy Model for Fidgety Movement Classification

General movements (GMs) are part of the spontaneous movement repertoire and are present from early fetal life onwards up to age five months. GMs are connected to infants' neurological development and can be qualitatively assessed via the General Movement Assessment. In particular, between the age of three to five months, typically developing infants produce fidgety movements and their absence provides strong evidence for the presence of cerebral palsy.

Extreme weather events, home damage, and the eroding locus of control

The catastrophic consequences of natural disasters on social and economic systems are extensively documented, yet their influence on individuals' sense of control over their life outcomes remains unexplored. This study pioneers an investigation into the causal effects of natural disaster-related home damage on the locus of control. 

Caregiver-Mediated Early Support Program Delivered Online Versus Care-as-Usual for Infants at Elevated Familial Likelihood for Autism

LiL' STEPS (Language development & Intervention Lab's SupporTing Early social-communication and language by Promoting caregiver Sensitive responsiveness) is a novel, manualized, caregiver-mediated early support program developed in India and delivered online for infants at elevated familial likelihood for autism. The program has been found to be feasible and acceptable. The preliminary efficacy of the LiL' STEPS program, which remains to be evaluated, was assessed in this study using a feasibility randomized controlled trial design. 

A pilot implementation study of a chronic pain core outcome set and decision tree for children and young people with cerebral palsy

This study aimed to (i) develop a decision tree to guide clinicians to use a core outcome set (COS) of chronic pain assessment tools specific to children and young people with cerebral palsy and (ii) pilot test the implementation of the decision tree and core set in clinical practice.

Corrigendum to “Developmental trajectories of socio-emotional outcomes of children and young people in out-of-home care – Insights from data of Pathways of Care Longitudinal Study (POCLS)”

Yalemzewod Assefa Gelaw PhD, MPH, BSc Honorary Research Associate Yalemzewod.Gelaw@thekids.org.au Honorary Research Associate Dr Yalemzewod Gelaw

“The Wrong Supports Are Worse than no Support”: Autistic Perspectives on Early-in-Life Infant Autism Supports

Evidence suggests that the earlier supports are provided to young Autistic children, the better the overall outcomes. Supports have typically only been available after an autism diagnosis but with increased knowledge about early developmental trajectories, clinical supports can now be offered prediagnosis for infants showing early autism features and/or those with a family history of autism. 

Scalability and scaling-up strategy of a physical activity policy intervention in Australian childcare centres

There is an urgent need for scalable interventions to promote physical activity in early childhood. An early childhood education and care physical activity policy intervention with implementation support strategies (Play Active) has been proposed for scale-up in Australia.