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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.
CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.
Physical activity improves physical and psychosocial outcomes in healthy children and in children with a range of chronic health conditions. Unfortunately, children with chronic health conditions have lower levels of physical activity compared to their healthy peers due to multiple restrictions in physical activities and therefore tend to have lower levels of physical activity compared with their peers. This paper describes the protocol for Move to Improve, a pragmatic trial of an individualised physical activity intervention for children with chronic health conditions.
Convalscent plasma (CP) was identified as a potential therapy for COVID-19 available early in the pandemic.
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.
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.
Since its inception in 2005, the US President's Malaria Initiative (PMI) has played a major role in the reductions in malaria morbidity and mortality observed across Africa. With the status of PMI funding and operations currently uncertain, we aimed to quantify the impact that a fully functioning PMI would have on malaria cases and deaths in Africa during 2025.
Among the increasing threats to the healthcare of transgender and gender-diverse people globally, are efforts to deny gender-affirming medical care to people under age 25 typically justified by stating that the human brain is not developed until the mid-to-late 20's. Thus, this line of reasoning states young adults are not sufficiently mature to be responsible for autonomous healthcare decision-making— at least in regard to gender-affirming care.
The widespread use of technology in daily life has raised concerns about its potential to disrupt social relationships, particularly within one of the most important human relationships: the parent-child relationship. This study assesses whether parental social media use (measured by a novel parental social media intensity scale) affects the parent-child relationship (measured by the child-parent relationship scale - short form), and whether parental self-efficacy (PSE, measured by the parenting sense of competence scale) moderates this effect.
Alexithymia is characterised by difficulties identifying and describing feelings, as well as a lack of focus on feelings. Alexithymia is a transdiagnostic risk factor for developing a wide array of psychopathologies, such as anxiety and depression, with a key hypothesised mechanism being the impairing impact of alexithymia on emotion regulation competency. However, no study has tested whether difficulties with emotion regulation mediate the link between alexithymia and psychopathological symptoms using longitudinal designs.