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Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as well as by American and European regulatory agencies following positive clinical trial outcomes. The trials were conducted in a narrow pediatric population defined by age, severity, and genotype. Broad approval of therapy necessitates close follow-up of potential rare adverse events and effectiveness in the larger real-world population.
The Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand the existing SMA dataset to capture items relevant to patient outcomes in a post-marketing environment. The CNDR SMA expanded registry is a longitudinal, prospective, observational study of patients with SMA in Canada designed to evaluate the safety and effectiveness of novel therapies and provide practical information unattainable in trials.
The consensus expanded dataset includes items that address therapy effectiveness and safety and is collected in a multicenter, prospective, observational study, including SMA patients regardless of therapeutic status. The expanded dataset is aligned with global datasets to facilitate collaboration. Additionally, consensus dataset development aimed to standardize appropriate outcome measures across the network and broader Canadian community. Prospective outcome studies, data use, and analyses are independent of the funding partner.
Prospective outcome data collected will provide results on safety and effectiveness in a post-therapy approval era. These data are essential to inform improvements in care and access to therapy for all SMA patients.
Research on bullying, mostly focusing on children of school age, has been active since the 1970s. Paralleling earlier work on aggression, bullying has often been described as maladaptive and dysfunctional behavior, and this has informed some intervention efforts. However, and again as for aggression generally, this view has been challenged in the 2000s (Ellis et al., 2012; Hawley, Little, & Rodkin, 2007; Kolbert & Crothers, 2003; Volk et al., 2012). It has been argued that bullying behavior is universal (historically and culturally, as well as in contemporary urban societies); that it is heritable, perhaps in part via temperament; and that it can have advantages for those who bully. The advantages would ultimately be for reproductive success, but via physical resources and social status, as well as attractiveness to the opposite sex.
Cybermentoring refers to virtual peer support in which young people themselves are trained as cybermentors and interact with those needing help and advice (cybermentees) online. This article describes the training in, and implementation of, a cross-national cybermentoring scheme, Beatbullying Europe, developed in the United Kingdom. It involved train-the-trainer workshops for partners and life mentors in six European countries (Italy, Spain, Portugal, Romania, Poland and the Czech Republic) in 2013–2014, followed by training sessions for pupil cybermentors aged 11–16 years. Although BeatBullying went into liquidation in November 2014, the project was largely completed. We (1) report an evaluation of the training of the life mentors and mentors, via questionnaire survey; and (2) discuss findings about the implementation of the scheme and its potential at a cross-national level, via partner interviews during and at the end of the project. The training was found to be highly rated in all respects, and in all six countries involved. The overall consensus from the data available is that there was a positive impact for the schools and professionals involved; some challenges encountered are discussed. The BeatBullying Europe project, despite being unfinished, was promising, and a similar approach deserves further support and evaluation in the future.
Play takes up much of the time budget of young children, and many animals, but its importance in development remains contested. This comprehensive collection brings together multidisciplinary and developmental perspectives on the forms and functions of play in animals, children in different societies, and through the lifespan. The Cambridge Handbook of Play covers the evolution of play in animals, especially mammals; the development of play from infancy through childhood and into adulthood; historical and anthropological perspectives on play; theories and methodologies; the role of play in children's learning; play in special groups such as children with impairments, or suffering political violence; and the practical applications of playwork and play therapy. Written by an international team of scholars from diverse disciplines such as psychology, education, neuroscience, sociology, evolutionary biology and anthropology, this essential reference presents the current state of the field in play research.