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People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.
Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe.
Syphilis is an important global health threat and little has changed in its treatment since the mid-20th century. For late-latent or syphilis infection of unknown duration, the standard treatment of multiple intramuscular injections of benzathine penicillin G (BPG) are associated with significant pain and distress to clients and caregivers, negatively impacting on treatment completion.
This study investigated the potential of using SARS-CoV-2 viral Increasing young people's physical activity, along with their motivation and confidence to be active, is widely advocated for supporting desirable health outcomes. Trans and gender diverse (henceforth; trans) young people experience significant physical activity-related barriers compared to cisgender (i.e., an individual for whom gender identity and sex presumed at birth are in alignment) peers.
An estimated 3.5%-5.9% of the global population live with rare diseases, and approximately 80% of these diseases have a genetic cause. Rare genetic diseases are difficult to diagnose, with some affected individuals experiencing diagnostic delays of 5-30 years. Next-generation sequencing has improved clinical diagnostic rates to 33%-48%. In a majority of cases, novel variants potentially causing the disease are discovered.
To investigate epigenomic indices of diabetic kidney disease (DKD) susceptibility among high-risk populations with type 2 diabetes mellitus.
Invasive Staphylococcus aureus (iSA) and group A Streptococcus (iGAS) impose significant health burdens globally. Both bacteria commonly cause skin and soft tissue infections (SSTIs), which can result in invasive disease. Understanding of the incidence of iSA and iGAS remains limited in settings with a high SSTI burden.
Synthesized findings demonstrate that people with intellectual disability, who live in community or residential settings, may fall more frequently, and at a younger age
This study describes how an informed consent process was developed for people with intellectual disability and how it is working in a current study
Infections by RV species A and C are the most common causes of exacerbations of asthma and a major cause of exacerbations of other respiratory disease.