28 research outputs found

    Венчурні інвестиції: сутність, форми, контрагенти

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    У статті досліджено генезис категорії "венчурні інвестиції", еволюцію форм організації венчурних інвестицій, конкретизовано специфіку інвесторів і реципієнтів венчурного капіталу

    Early motor outcomes in infants with critical congenital heart disease are related to neonatal brain development and brain injury

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    Aim To assess the relationship between neonatal brain development and injury with early motor outcomes in infants with critical congenital heart disease (CCHD). Method Neonatal brain magnetic resonance imaging was performed after open-heart surgery with cardiopulmonary bypass. Cortical grey matter (CGM), unmyelinated white matter, and cerebellar volumes, as well as white matter motor tract fractional anisotropy and mean diffusivity were assessed. White matter injury (WMI) and arterial ischaemic stroke (AIS) with corticospinal tract (CST) involvement were scored. Associations with motor outcomes at 3, 9, and 18 months were corrected for repeated cardiac surgery. Results Fifty-one infants (31 males, 20 females) were included prospectively. Median age at neonatal surgery and postoperative brain magnetic resonance imaging was 7 days (interquartile range [IQR] 5-11d) and 15 days (IQR 12-21d) respectively. Smaller CGM and cerebellar volumes were associated with lower fine motor scores at 9 months (CGM regression coefficient=0.51, 95% confidence interval [CI]=0.15-0.86; cerebellum regression coefficient=3.08, 95% CI=1.07-5.09) and 18 months (cerebellum regression coefficient=2.08, 95% CI=0.47-5.12). The fractional anisotropy and mean diffusivity of white matter motor tracts were not related with motor scores. WMI was related to lower gross motor scores at 9 months (mean difference -0.8SD, 95% CI=-1.5 to -0.2). AIS with CST involvement increased the risk of gross motor problems and muscle tone abnormalities. Cerebral palsy (n=3) was preceded by severe ischaemic brain injury. Interpretation Neonatal brain development and injury are associated with fewer favourable early motor outcomes in infants with CCHD

    Mutationen im PTS-Gen und mögliche Auswirkungen auf Funktion und Struktur der 6-Pyruvoyl-Tetrahydropterin-Synthase

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    Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Main body: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way. Conclusion: A JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.</p

    Consensus-based recommendations for the management of juvenile dermatomyositis

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    Background In 2012, a European initiative called Single Hub and Access point for pediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile dermatomyositis (JDM) is a rare disease within the group of paediatric rheumatic diseases (PRDs) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians' experience. Consequently, treatment regimens differ throughout Europe. Objectives To provide recommendations for diagnosis and treatment of JDM. Methods Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was constituted, consisting of 19 experienced paediatric rheumatologists and 2 experts in paediatric exercise physiology and physical therapy, mainly from Europe. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using nominal group technique. Recommendations were accepted if > 80% agreement was reached. Results In total, 7 overarching principles, 33 recommendations on diagnosis and 19 recommendations on therapy were accepted with > 80% agreement among experts. Topics covered include assessment of skin, muscle and major organ involvement and suggested treatment pathways. Conclusions The SHARE initiative aims to identify best practices for treatment of patients suffering from PRD. Within this remit, recommendations for the diagnosis and treatment of JDM have been formulated by an evidenceinformed consensus process to produce a standard of care for patients with JDM throughout Europe.Peer reviewe

    Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: A study protocol

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    Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Main body: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way. Conclusion: A JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters

    Splinting the juvenile arthritic wrist: a clinical observation

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    Hand function in children is very important in the development of skills needed for daily childhood activities; therefore, preserving this function warrants special attention. One of the interventions aiming to preserve functionis splinting of the affected wrist joint. The rationale for the use of splinting is to balance rest and activity, therebypreserving wrist function. However, the evidence-based knowledge to support this rationale is scarce. To determine the validity of “balancing rest and activity of the affected wrists to preserve function,” we reviewed ourown data, data in the literature regarding rheumatic wrist problems in children, and data from a 15-year followup study of rheumatic wrist problems in an adult cohort of our adult rheumatology counterpart within the medicalcenter

    The effect of an integrated perceived competence and motor intervention in children with developmental coordination disorder

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    BACKGROUND AND AIMS: Children with DCD have lower self-perceptions and are less physically active than typically developing children. The aim of this quasi-experimental study was to investigate whether an integrated perceived competence and motor intervention affects DCD children's motor performance, self-perceptions, and physical activity compared with a motor intervention only. METHODS AND PROCEDURES: The intervention group consisted of 20 children and the care-as-usual group consisted of 11 children, all aged 7-10 years. The perceived competence component of the intervention focused primarily on providing positive, specific, and progress feedback to enhance self-perceptions. We assessed children at baseline, after 12 treatment sessions (trial end-point), and at 3-month follow-up. OUTCOMES AND RESULTS: Mixed linear models revealed no differences between the intervention and the care-as-usual group on any of the outcome measures. Children improved their motor performance and increased their perceived athletic competence, global self-esteem, and perceived motor competence after 12 treatment sessions. This improvement was maintained at 3-month follow-up. Motor task values and physical activity remained unchanged for all children. CONCLUSIONS AND IMPLICATIONS: A perceived competence and motor intervention is as effective as care-as-usual in children with DCD. Future research should focus on improving physical activity in children with DCD. WHAT THIS PAPER ADDS: This is the first study that has investigated the effect of an integrated perceived competence and motor intervention (intervention group) on motor performance, self-perceptions, and physical activity compared with a motor intervention (care-as-usual group) in children with DCD. We made the perceived competence component explicit by providing positive, specific, and progress feedback to enhance children's self-perceptions. Also, this is one of the first studies that has investigated the effect after both 12 treatment sessions (trial end-point) and after 3 months of no intervention (3-month follow-up). We found no differences between the intervention and the care-as-usual group, but children improved their motor performance and increased (most) of their self-perceptions after 12 treatment sessions, while physical activity remained the same. The improvement was still present at the 3-month follow-up. We also benchmarked our results about self-perceptions and physical activity to a group of typically developing children. Self-perceptions in children with DCD had improved to the level of typically developing children after 12 treatment sessions, but their physical activity levels remained significantly lower. This result was the same at the 3-month follow-up, except for perceived athletic competence, which was lower in children with DCD at the 3-month follow-up. In accordance with previous intervention studies that have investigated children with DCD, we found large intra-group variability in the change in motor performance and self-perceptions in children with DCD. We argue that we need to better understand why some children with DCD improve and others do not after a motor intervention

    Global self-esteem, perceived athletic competence, and physical activity in children : A longitudinal cohort study

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    Objectives: The Exercise and Self-Esteem Model is used as a theoretical framework to describe associations between global self-esteem and physical activity, mediated by perceived athletic competence. We know little about how these associations develop over time in elementary school children. We examined the change in, and associations between, global self-esteem, perceived athletic competence, and moderate-to-vigorous physical activity (MVPA) in children from kindergarten to grade 4. We also investigated if this change and these associations were different for boys and girls. Design: A prospective longitudinal cohort-sequential design that consisted of two cohorts of children. Method: Children in cohort I were followed from kindergarten to grade 2, and children in cohort II were followed from grade 2 to grade 4. Global self-esteem and perceived athletic competence were measured with the Self-Perception Profile for Children (SPPC) (n=292; 148 boys), while MVPA was measured with proxy-reports for physical activity filled in by parents (n=184; 88 boys). Results: Global self-esteem, perceived athletic competence, and MVPA remained stable. Global self-esteem was the same in boys and girls, while boys reported higher levels of perceived athletic competence and were more physically active than girls. The change in global self-esteem was significantly associated with perceived athletic competence and MVPA in girls, but not in boys. Conclusion: There are few developmental changes in global self-esteem, perceived athletic competence, and MVPA from kindergarten to grade 4. The change in global self-esteem was associated with perceived athletic competence and MVPA in girls, but not in boys

    The change in perceived motor competence and motor task values during elementary school : A longitudinal cohort study

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    Participation in motor activities is essential for social interaction and life satisfaction in children. Self-perceptions and task values have a central position in why children do or do not participate in (motor) activities. Investigating developmental changes in motor self-perceptions and motor task values in elementary school children would provide vital information about their participation in motor activities. We therefore examined the change in, and associations between, self-perceptions and task values of fine motor competence, ball competence, and athletic competence in 292 children from kindergarten to grade 4. We also investigated differences between boys and girls, and between children with motor problems and typically developing children. Results indicated that self-perceptions and task values are domain specific and differ between boys and girls, but not between children with motor problems and typically developing children. Self-perceptions were not associated with task values. Educators should address specific self-perceptions to enhance participation into the corresponding motor activities in children between kindergarten and grade 4, and differences in self-perceptions and task values between boys and girls should be taken into account

    Responsiveness of exercise parameters in children with inflammatory myositis

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    OBJECTIVE: Juvenile dermatomyositis (DM) is an inflammatory myopathy in which the immune system targets the microvasculature of the skeletal muscle and skin, leading to significant muscle weakness and exercise intolerance, although the precise etiology is unknown. The goal of this study was to investigate the changes in exercise capacity in children with myositis during active and inactive disease periods and to study the responsiveness of exercise parameters. METHODS: Thirteen children with juvenile DM (mean+/-SD age 11.2+/-2.6 years) participated in this study. Patients performed a maximal exercise test using an electronically braked cycle ergometer and respiratory gas analysis system. Exercise parameters were analyzed, including peak oxygen uptake (VO2peak), peak work rate (Wpeak), and ventilatory anaerobic threshold (VAT). All children were tested during an active period of the disease and during a remission period. From these data, 4 different response statistics were calculated. RESULTS: The children performed significantly better during a remission period compared with a period of active disease. Most exercise parameters showed a very large response. The 5 most responsive parameters were Wpeak, Wpeak (percent predicted), oxygen pulse, VO2peak, and power at the VAT. CONCLUSION: We found in our longitudinal study that children with active juvenile DM had significantly reduced exercise parameters compared with a remission period. Moreover, we found that several parameters had very good responsiveness. With previously established validity and reliability, exercise testing has been demonstrated to be an excellent noninvasive instrument for the longitudinal followup of children with myositis
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