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- Bosma, A. L., et al.
(författare)
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Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema (TREAT) Registry Taskforce
- 2023
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Ingår i: Journal of the European Academy of Dermatology and Venereology. - : Blackwell Publishing. - 0926-9959 .- 1468-3083. ; 37:1, s. 123-136
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: the TREatment of ATopic eczema (TREAT) Registry Taskforce is a collaborative international network of registries collecting data of atopic eczema (AE) patients receiving systemic and phototherapy with the common goal to provide long-term real-world data on the effectiveness, safety and cost-effectiveness of therapies. A core dataset, consisting of domains and domain items with corresponding measurement instruments, has been developed to harmonize data collection.OBJECTIVES: we aimed to give an overview of the status and characteristics of the eight established TREAT registries, and to perform a mapping exercise to examine the degree of overlap and pooling ability between the national registry datasets. This will allow us to determine which research questions can be answered in the future by pooling data.METHODS: all eight registries were asked to share their dataset and information on the current status and characteristics. The overlap between the core dataset and each registry dataset was identified (according to the domains, domain items and measurement instruments of the TREAT core dataset).RESULTS AND CONCLUSIONS: a total of 4,702 participants have been recruited in the 8 registries as of 1st of May 2022. Of the 69 core dataset domain items, data pooling was possible for 69 domain item outcomes in TREAT NL (the Netherlands), 61 items in A-STAR (UK and Ireland), 38 items in TREATgermany (Germany), 36 items in FIRST (France), 33 items in AtopyReg (Italy), 29 items in Biobadatop (Spain), 28 items in SCRATCH (Denmark) and 20 items in SwedAD (Sweden). Pooled analyses across all registries can be performed on multiple important domain items, covering the main aims of analyzing data on the (cost-)effectiveness and safety of AE therapies. These results will facilitate future comparative or joint analyses.
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- van Es, Michael A, et al.
(författare)
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Angiogenin variants in Parkinson disease and amyotrophic lateral sclerosis
- 2011
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Ingår i: Annals of Neurology. - : Wiley-Blackwell. - 0364-5134 .- 1531-8249. ; 70:6, s. 964-973
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Several studies have suggested an increased frequency of variants in the gene encoding angiogenin (ANG) in patients with amyotrophic lateral sclerosis (ALS). Interestingly, a few ALS patients carrying ANG variants also showed signs of Parkinson disease (PD). Furthermore, relatives of ALS patients have an increased risk to develop PD, and the prevalence of concomitant motor neuron disease in PD is higher than expected based on chance occurrence. We therefore investigated whether ANG variants could predispose to both ALS and PD.METHODS: We reviewed all previous studies on ANG in ALS and performed sequence experiments on additional samples, which allowed us to analyze data from 6,471 ALS patients and 7,668 controls from 15 centers (13 from Europe and 2 from the USA). We sequenced DNA samples from 3,146 PD patients from 6 centers (5 from Europe and 1 from the USA). Statistical analysis was performed using the variable threshold test, and the Mantel-Haenszel procedure was used to estimate odds ratios.RESULTS: Analysis of sequence data from 17,258 individuals demonstrated a significantly higher frequency of ANG variants in both ALS and PD patients compared to control subjects (p = 9.3 × 10(-6) for ALS and p = 4.3 × 10(-5) for PD). The odds ratio for any ANG variant in patients versus controls was 9.2 for ALS and 6.7 for PD.INTERPRETATION: The data from this multicenter study demonstrate that there is a strong association between PD, ALS, and ANG variants. ANG is a genetic link between ALS and PD.
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- Devos, David, et al.
(författare)
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Trial of Deferiprone in Parkinson’s Disease
- 2022
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Ingår i: New England Journal of Medicine. - : Massachusetts Medical Society. - 0028-4793 .- 1533-4406. ; 387:22, s. 2045-2055
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUNDIron content is increased in the substantia nigra of persons with Parkinson's disease and may contribute to the pathophysiology of the disorder. Early research suggests that the iron chelator deferiprone can reduce nigrostriatal iron content in persons with Parkinson's disease, but its effects on disease progression are unclear.METHODSWe conducted a multicenter, phase 2, randomized, double-blind trial involving participants with newly diagnosed Parkinson's disease who had never received levodopa. Participants were assigned (in a 1:1 ratio) to receive oral deferiprone at a dose of 15 mg per kilogram of body weight twice daily or matched placebo for 36 weeks. Dopaminergic therapy was withheld unless deemed necessary for symptom control. The primary outcome was the change in the total score on the Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS; range, 0 to 260, with higher scores indicating more severe impairment) at 36 weeks. Secondary and exploratory clinical outcomes at up to 40 weeks included measures of motor and nonmotor disability. Brain iron content measured with the use of magnetic resonance imaging was also an exploratory outcome.RESULTSA total of 372 participants were enrolled; 186 were assigned to receive deferiprone and 186 to receive placebo. Progression of symptoms led to the initiation of dopaminergic therapy in 22.0% of the participants in the deferiprone group and 2.7% of those in the placebo group. The mean MDS-UPDRS total score at baseline was 34.3 in the deferiprone group and 33.2 in the placebo group and increased (worsened) by 15.6 points and 6.3 points, respectively (difference, 9.3 points; 95% confidence interval, 6.3 to 12.2; P<0.001). Nigrostriatal iron content decreased more in the deferiprone group than in the placebo group. The main serious adverse events with deferiprone were agranulocytosis in 2 participants and neutropenia in 3 participants.CONCLUSIONSIn participants with early Parkinson's disease who had never received levodopa and in whom treatment with dopaminergic medications was not planned, deferiprone was associated with worse scores in measures of parkinsonism than those with placebo over a period of 36 weeks.
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- Ebrahimi, M., et al.
(författare)
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A Systematic Approach to Automotive Security
- 2023
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Ingår i: Lecture Notes in Computer Science, vol 14000. - Cham : Springer Science and Business Media Deutschland GmbH. - 9783031274800 ; , s. 598-609
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Konferensbidrag (refereegranskat)abstract
- We propose a holistic methodology for designing automotive systems that consider security a central concern at every design stage. During the concept design, we model the system architecture and define the security attributes of its components. We perform threat analysis on the system model to identify structural security issues. From that analysis, we derive attack trees that define recipes describing steps to successfully attack the system’s assets and propose threat prevention measures. The attack tree allows us to derive a verification and validation (V &V) plan, which prioritizes the testing effort. In particular, we advocate using learning for testing approaches for the black-box components. It consists of inferring a finite state model of the black-box component from its execution traces. This model can then be used to generate new relevant tests, model check it against requirements, and compare two different implementations of the same protocol. We illustrate the methodology with an automotive infotainment system example. Using the advocated approach, we could also document unexpected and potentially critical behavior in our example systems.
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| 17. |
- Ferreira, J. J., et al.
(författare)
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Summary of the recommendations of the EFNS/MDS-ES review on therapeutic management of Parkinson's disease
- 2013
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Ingår i: European Journal of Neurology. - : Wiley. - 1351-5101. ; 20:1, s. 5-15
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To summarize the 2010 EFNS/MDS-ES evidence-based treatment recommendations for the management of Parkinson's disease (PD). This summary includes the treatment recommendations for early and late PD. Methods: For the 2010 publication, a literature search was undertaken for articles published up to September 2009. For this summary, an additional literature search was undertaken up to December 2010. Classification of scientific evidence and the rating of recommendations were made according to the EFNS guidance. In cases where there was insufficient scientific evidence, a consensus statement ('good practice point') is made. Results and Conclusions:: For each clinical indication, a list of therapeutic interventions is provided, including classification of evidence.
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- Heijboer, Amber, et al.
(författare)
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Plant biomass, soil microbial community structure and nitrogen cycling under different organic amendment regimes; a 15N tracer-based approach
- 2016
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Ingår i: Applied Soil Ecology. - : Elsevier BV. - 0929-1393. ; 107, s. 251-260
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Tidskriftsartikel (refereegranskat)abstract
- Sustainable agriculture requires nutrient management options that lead to a profitable crop yield with relatively low nitrogen (N) losses to the environment. We studied whether the addition of contrasting organic amendments together with inorganic fertilizer can promote both requirements simultaneously. In particular we studied how the chemical composition of organic amendments affects the biomass, activity and composition of the soil microbial community and subsequently carbon (C) and N mineralization, microbial N immobilization and plant growth and nutrient uptake. In a pot experiment, Brussels sprouts (Brassica oleracea, cvar. Cyrus) were grown on arable soil, mixed with 15N-labelled mineral fertilizer and different kinds of organic amendments (cattle manure solid fraction, maize silage, lucerne silage, wheat straw) differing in C:N ratio and lignin content. After 69 and 132 days, destructive sampling took place to assess the effects of the different treatments on soil microbial biomass (microscopic measurements), microbial community composition (phospholipid fatty acid profiles), soil microbial activity (14C-leucine incorporation), C and N mineralization, plant biomass and 15N retrieval in soil pools, microbial biomass and plant biomass. Addition of organic amendments increased soil microbial biomass, activity and fungal/bacterial ratio and created distinct microbial community compositions, whereby high C:N ratio organic amendments had stronger effects compared to low C:N ratio amendments. Structural equation modelling showed that higher values of soil microbial activity were associated with increased N mineralization rates, increased plant biomass and plant 15N uptake, while microbial 15N immobilization was associated with soil microbial community composition. The outcomes of this study highlight the importance of the chemical composition and the amount of the organic amendments for finding a balance between plant N uptake, microbial N immobilization and N retention in labile and stable soil pools through the effects on the composition and activity of the soil microbial community. The results provide insights that can be used in designing combined input (nutrient and organic) nutrient management strategies for a more sustainable agriculture.
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- Kruse, Christopher, et al.
(författare)
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Care of Late-Stage Parkinsonism : Resource Utilization of the Disease in Five European Countries
- 2024
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Ingår i: Movement Disorders. - 0885-3185. ; 39:3, s. 571-584
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Tidskriftsartikel (refereegranskat)abstract
- Background: Parkinson's disease (PD) is a neurodegenerative disease that leads to progressive disability. Cost studies have mainly explored the early stages of the disease, whereas late-stage patients are underrepresented. Objective: The aim is to evaluate the resource utilization and costs of PD management in people with late-stage disease. Methods: The Care of Late-Stage Parkinsonism (CLaSP) study collected economic data from patients with late-stage PD and their caregivers in five European countries (France, Germany, the Netherlands, UK, Sweden) in a range of different settings. Patients were eligible to be included if they were in Hoehn and Yahr stage >3 in the on state or Schwab and England stage at 50% or less. In total, 592 patients met the inclusion criteria and provided information on their resource utilization. Costs were calculated from a societal perspective for a 3-month period. A least absolute shrinkage and selection operator approach was utilized to identify the most influential independent variables for explaining and predicting costs. Results: During the 3-month period, the costs were €20,573 (France), €19,959 (Germany), €18,319 (the Netherlands), €25,649 (Sweden), and €12,156 (UK). The main contributors across sites were formal care, hospitalization, and informal care. Gender, age, duration of the disease, Unified Parkinson's Disease Rating Scale 2, the EQ-5D-3L, and the Schwab and England Scale were identified as predictors of costs. Conclusion: Costs in this cohort of individuals with late-stage PD were substantially higher compared to previously published data on individuals living in earlier stages of the disease. Resource utilization in the individual sites differed in part considerably among these three parameters mentioned.
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| 20. |
- Lalam, Radhesh, et al.
(författare)
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ESSR Consensus Document for Detection, Characterization, and Referral Pathway for Tumors and Tumorlike Lesions of Bone
- 2017
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Ingår i: Seminars in Musculoskeletal Radiology. - : Georg Thieme Verlag KG. - 1089-7860 .- 1098-898X. ; 21:5, s. 630-647
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Forskningsöversikt (refereegranskat)abstract
- Benign bone tumors are rare but are more common than primary malignant bone tumors. The early accurate diagnosis and reliable differentiation of these rare benign tumors and tumor mimickers from the even rarer malignant tumors with subsequent appropriate treatment or watchful waiting is crucial for the clinical outcome. Bone tumors are often a source of diagnostic and therapeutic uncertainty. Thus this European Society of Musculoskeletal Radiology consensus document is intended to help radiologists in their decision making and support discussion among clinicians who deal with patients with suspected or proven bone tumors. Evaluating these tumors starts with a patient history and physical examination. Radiography is the principal imaging modality and often can reliably diagnose a benign bone tumor by providing information about localization, matrix, aggressiveness, size, and (potential) multiplicity. In a significant number of cases, additional imaging is not necessary. Potentially malignant entities recognized by radiography should be referred for magnetic resonance imaging, which also serves as a preoperative local staging modality, with specific technical requirements. Indeterminate tumors, or tumors in which therapy depends on histology results, should be biopsied. For biopsy, we strongly recommend referral to a specialist regional sarcoma treatment center (RSTC), where a multidisciplinary tumor team, including a specialist pathologist, radiologist, and sarcoma surgeon, are involved. Additional staging modalities are entity specific and should be performed according to the recommendations of the RSTC.
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- Meinders, Marjan J., et al.
(författare)
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Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings. Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The “PD_Pal intervention” comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed “Parkinson Support Plan-workbook”. The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel–Haenszel methods and multilevel logistic regression models, correcting for multiple testing. Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings. Clinical Trial Registration: www.trialregister.nl, NL8180.
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| 22. |
- Schrag, A., et al.
(författare)
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The late stage of Parkinson's –results of a large multinational study on motor and non-motor complications
- 2020
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Ingår i: Parkinsonism and Related Disorders. - : Elsevier BV. - 1353-8020. ; 75, s. 91-96
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: There is little information on the late stages of parkinsonism. Methods: We conducted a multicentre study in 692 patients with late stage parkinsonism in six European countries. Inclusion criteria were disease duration of ≥7 years and either Hoehn and Yahr stage ≥4 or Schwab and England score of 50 or less. Results: Average disease duration was 15.4 (SD 7.7) years and mean total UPDRS score was 82.7 (SD 22.4). Dementia according to MDS-criteria was present in 37% of patients. Mean levodopa equivalence dose was 874.1 (SD 591.1) mg/d. Eighty two percent of patients reported falls, related to freezing (16%) or unrelated to freezing (21% of patients) or occurring both related and unrelated to freezing (45%), and were frequent in 26%. Moderate-severe difficulties were reported for turning in bed by 51%, speech by 43%, swallowing by 16% and tremor by 11%. Off-periods occurred in 68% and were present at least 50% of the day in 13%, with morning dystonia occurring in 35%. Dyskinesias were reported by 45% but were moderate or severe only in 7%. Moderate-severe fatigue, constipation, urinary symptoms and nocturia, concentration and memory problems were encountered by more than half of participants. Hallucinations (44%) or delusions (25%) were present in 63% and were moderate-severe in 15%. The association with overall disability was strongest for severity of falls/postural instability, bradykinesia, cognitive score and speech impairment. Conclusion: These data suggest that current treatment of late stage parkinsonism in the community remains insufficiently effective to alleviate disabling symptoms in many patients.
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