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Rare Occurrence of Congenital Neuroblastoma and Tuberous Sclerosis

Citation: Gardner M, Shah S, Jain N, Bynevelt M. Rare Occurrence of Congenital Neuroblastoma and Tuberous Sclerosis. Pediatr Neurol. 2026;176:62-3.

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.

Development and initial validation of the Communication Inventory Disability – Observer Reported (CID-OR): a measure of communication in CDKL5 deficiency disorder

CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder characterised by early onset seizures combined with complex healthcare needs and developmental impairment that influence functional domains including communication. Communication is a high priority domain for families but currently used measures demonstrate floor effects. 

Prevalence of herbal medicine use for maternal conditions in Tanzania: a systematic review and meta-analysis

Studies reported the prevalence of herbal medicines used for various maternal conditions across regions in Tanzanian communities. However, the lack of a national estimate of herbal medicine use makes it challenging for policymakers, herbal medicine regulators, and healthcare practitioners to make informed decisions on herbal medicine-related policies and practices to optimize their contribution to maternal healthcare.

Marked Variation in Paediatric Problematic Severe Asthma Services Across Australia and New Zealand

Asthma affects > 10% of children in Australia and New Zealand (NZ), with up to 5% of those having severe disease, presenting a management challenge. We aimed to survey tertiary paediatric respiratory services across Australia and NZ using a custom-designed questionnaire, to conduct a cross-sectional observational study of the numbers of children with problematic severe asthma seen, the number treated with biologic therapy, outpatient clinic/multidisciplinary team services available, investigations and tools routinely used and approaches utilised for transition to adult care.

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.

Moral injury in clinical and academic medicine—it is time to act

When doctors working within healthcare systems under pressure perpetrate, witness, or fail to prevent acts that contradict their own moral or ethical values and expectations, it can lead to moral distress or moral injury. This can result from active behaviour and from purposeful inactive behaviour. It is a growing and critical concern, representing significant distress that extends far beyond traditional concepts such as burnout. This article discusses moral injury in clinical and academic medicine and actively gives suggestions to prevent and address moral injury. 

A randomized prospective study of neonatal hepatitis B vaccine immunogenicity in The Gambia and Papua New Guinea

Protection of newborns from infection can be achieved through maternal or vaccine-induced antibodies, but the factors influencing vaccine protection (correlate of protection) and subsequent infant immunity remain insufficiently understood. Further investigation is essential to optimize early-life vaccination strategies.

Working together for perioperative excellence in pediatric perioperative research

Pediatric perioperative care can be described as a journey, starting when surgery is first contemplated, all the way through to a patient’s full recovery. For the child and their family, this journey spans from the time at home pre-operatively through a hospital stay and finishes with at-home recovery.

Evaluating Type 1 Diabetes Resources to Improve Awareness and Knowledge of Type 1 Diabetes Within Community Sport Settings

A main challenge identified by youth during exercise and sport is the lack of knowledge and awareness around type 1 diabetes (T1D) particularly in community sport settings. Working with youth living with T1D, parents and community sport coaches, our team has developed resources for the T1D and sporting community. This study was to evaluate the acceptability and usability of the resources.