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Article
Open AccessA Systematic Review of Cognition in Cervical Dystonia
Growing evidence points to a spectrum of non-motor symptoms, including cognitive difficulties that have a greater impact on functional outcomes and quality of life than motor symptoms in cervical dystonia (CD)...
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Article
Open AccessDisseminating the research findings from the adolescents and adults living with Perinatal HIV (AALPHI) study: an approach from young people living with HIV
The Adolescents and Adults Living with Perinatal HIV (AALPHI) study is one of only three cohort studies worldwide evaluating the impact of HIV on young people living with perinatal HIV (PLHIV) relative to a co...
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Article
Open AccessThe impact of bleeding event frequency on health-related quality of life and work productivity outcomes in a European cohort of adults with haemophilia A: insights from the CHESS II study
Haemophilia A carries a substantial healthcare burden, affecting health-related quality of life (HRQoL). The Cost of Haemophilia in Men: a Socioeconomic Survey II (CHESS II), a retrospective real-world study, ...
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Article
Open AccessEarly life stress, low-grade systemic inflammation and weaker suppression of the default mode network (DMN) during face processing in Schizophrenia
Childhood trauma (CT) is associated with lower cognitive and social cognitive function in schizophrenia. Recent evidence suggests that the relationship between CT and cognition is mediated by both low-grade sy...
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Article
Open AccessHealth-related quality of life, direct medical and societal costs among children with moderate or severe haemophilia in Europe: multivariable models of the CHESS-PAEDs study
Haemophilia bears substantial humanistic and economic burden on children and their caregivers. Characterising the differential impact of severe versus moderate paediatric haemophilia is important for clinical ...
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Article
Open AccessDifferential humanistic and economic burden of mild, moderate and severe haemophilia in european adults: a regression analysis of the CHESS II study
The lifelong nature of haemophilia makes patient-centred and societal assessments of its impact important to clinical and policy decisions. Quantifying the humanistic and economic burden by severity is key to ...
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Article
Open AccessClinical, humanistic, and economic burden of severe haemophilia B in adults receiving factor IX prophylaxis: findings from the CHESS II real-world burden of illness study in Europe
Real-world studies of the burden of severe haemophilia B in the context of recent therapeutic advances such as extended half-life (EHL) factor IX (FIX) products are limited. We analysed data from the recent CH...
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Article
Open AccessClinical, humanistic, and economic burden of severe hemophilia B in the United States: Results from the CHESS US and CHESS US+ population surveys
Hemophilia B is a rare congenital bleeding disorder that has a significant negative impact on patients’ functionality and health-related quality of life. The standard of care for severe hemophilia B in the Uni...
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Article
Open AccessReal-world evidence on Kovaltry (81-8973) in children with moderate or severe hemophilia A in Europe: a nested cohort analysis
Untreated hemophilia A patients may experience recurrent bleeding events leading to debilitating joint damages. While RCT and pharmacokinetic data support the value of Kovaltry [an unmodified full-length recom...
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Article
A Systematic Review of Cognitive Outcomes in Angiographically Negative Subarachnoid Haemorrhage
Clinical outcomes, including performance on cognitive assessment, in patients with angiographically negative subarachnoid haemorrhage (anSAH) are often interpreted as benign with a good prognostic trajectory. ...
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Article
Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient–caregiver dyads
Caregiver burden is a recognised consequence of caring for a patient with neurodegeneration. Amyotrophic lateral sclerosis (ALS) differs from other neurodegenerations by its rapid progression and impairment of...
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Article
Assessing behavioural changes in ALS: cross-validation of ALS-specific measures
The Beaumont Behavioural Inventory (BBI) is a behavioural proxy report for the assessment of behavioural changes in ALS. This tool has been validated against the FrSBe, a non-ALS-specific behavioural assessmen...
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Article
Open AccessThe cost of severe haemophilia in Europe: the CHESS study
Severe haemophilia is associated with major psychological and economic burden for patients, caregivers, and the wider health care system. This burden has been quantified and documented for a number of European...
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Article
Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival
Few studies in amyotrophic lateral sclerosis (ALS) have profiled disease-specific features of the condition in conjunction with assessment of caregivers’ burden, distress, quality of life, and investigated pat...
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Chapter
Huntington’s Disease
Huntington’s disease (HD) is an autosomal dominant neurodegenerative brain disorder causing movement, cognitive and emotional deterioration leading to progressive disability and death. The genetic mutation was...
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Article
Erratum to: Caregiver burden in amyotrophic lateral sclerosis: a cross-sectional investigation of predictors
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Article
Caregiver burden in amyotrophic lateral sclerosis: a cross-sectional investigation of predictors
The objective of the study was to investigate whether cognitive and behavioural impairment in Amyotrophic Lateral Sclerosis (ALS) contributes to caregiver burden, and whether carer burden affects patient outco...
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Article
Less is more: lag screw only fixation of lateral malleolar fractures
Displaced fractures of the lateral malleolus are typically treated with plate osteosynthesis with or without the use of lag screws, and immobilisation in a plaster cast for up to 6 weeks. Fixation through a sm...
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Article
Dewey and Russell on the Possibility of Immediate Knowledge
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Article
A Multimodal, Second Generation, Posttraumatic Stress Disorder Rehabilitation Program
Second Generation posttraumatic stress disorder (PTSD) treatment programs were recently proposed as one component of a model of treatment of chronic PTSD. While First Generation PTSD programs emp...
