60 research outputs found
A Roundtable Conversation:Feminist Collaborative Ethos in International Law
This roundtable discussion focuses on the collective commitment and the praxis of a feminist collaborative ethos in international law to imagine and centre alternative futures in the field. This discussion took place as part of the virtual workshop ‘International Law Dis/Oriented: Queer Legacies, and Queer Futures Workshop’ from which this special issue emerged. In this transcript of the roundtable, Shaimaa Abdelkarim, Farnush Ghadery, and Rohini Sen discuss with Lena Holzer how turning to feminist collectivity – focused on care, collaboration, and solidarity – can help to disrupt and push against gendered, racialised, and colonial power structures embedded in academic spaces. They examine their intertwined positionalities along with various pedagogical and methodological approaches to determine the functions of critical feminist and queer thoughts in international law. Inculcating a praxis of feminist collaborative ethos in the scholarship and teaching of international law, they hope to present a challenge to the artificial individualisation of the profession and its increasing neoliberalisation
The birth of antibiotics
Did you know that
Alexander Fleming was
not the only researcher
involved in the Nobel
Prize-winning discovery
of penicillin? Or that
it took 13 years for
penicillin to be of use
for humans? We present
an interactive resource
to unearth unsung
surprises in the process of
discovery of penicillin
Development and validation of Gaucher disease type 1 (GD1)-specific patient-reported outcome measures (PROMs) for clinical monitoring and for clinical trials.
BACKGROUND: Disease-specific patient-reported outcome measures (PROMs) are fundamental to understanding the impact on, and expectations of, patients with genetic disorders, and can facilitate constructive and educated conversations about treatments and outcomes. However, generic PROMs may fail to capture disease-specific concerns. Here we report the development and validation of a Gaucher disease (GD)-specific PROM for patients with type 1 Gaucher disease (GD1) a lysosomal storage disorder characterized by hepatosplenomegaly, thrombocytopenia, anemia, bruising, bone disease, and fatigue. RESULTS AND DISCUSSION: The questionnaire was initially developed with input from 85 patients or parents of patients with GD1 or GD3 in Israel. Owing to few participating patients with GD3, content validity was assessed for patients with GD1 only. Content validity of the revised questionnaire was assessed in 33 patients in the US, France, and Israel according to US Food and Drug Administration standards, with input from a panel of six GD experts and one patient advocate representative. Concept elicitation interviews explored patient experience of symptoms and treatments, and a cognitive debriefing exercise explored patients' understanding and relevance of instructions, items, response scales, and recall period. Two versions of the questionnaire were subsequently developed: a 24-item version for routine monitoring in clinical practice (rmGD1-PROM), and a 17-item version for use in clinical trials (ctGD1-PROM). Psychometric validation of the ctGD1-PROM was assessed in 46 adult patients with GD1 and re-administered two weeks later to examine test-retest reliability. Findings from the psychometric validation study revealed excellent internal consistency and strong evidence of convergent validity of the ctGD1-PROM based on correlations with the 36-item Short Form Health Survey. Most items were found to show moderate, good, or excellent test-retest reliability. CONCLUSIONS: Development of the ctGD1-PROM represents an important step forward for researchers measuring the impact of GD and its respective treatment
Update and European consensus on a patient-centered core outcome set for multiple myeloma in clinical practice and research
Update and European consensus on a patient-centered core outcome set for multiple myeloma in clinical practice and research
A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies
Objective: Clinical care of rare and complex epilepsies is challenging, because evidence-based treatment guidelines are scarce, the experience of many physicians is limited, and interdisciplinary treatment of comorbidities is required. The pathomechanisms of rare epilepsies are, however, increasingly understood, which potentially fosters novel targeted therapies. The objectives of our survey were to obtain an overview of the clinical practice in European tertiary epilepsy centers treating patients with 5 arbitrarily selected rare epilepsies and to get an estimate of potentially available patients for future studies.
Methods: Members of the European Reference Network for rare and complex epilepsies (EpiCARE) were invited to participate in a web-based survey on clinical practice of patients with Dravet syndrome, tuberous sclerosis complex (TSC), autoimmune encephalitis, and progressive myoclonic epilepsies including Unverricht Lundborg and Unverricht-like diseases. A consensus-based questionnaire was generated for each disease.
Results: Twenty-six of 30 invited epilepsy centers participated. Cohorts were present in most responding centers for TSC (87%), Dravet syndrome (85%), and autoimmune encephalitis (71%). Patients with TSC and Dravet syndrome represented the largest cohorts in these centers. The antiseizure drug treatments were rather consistent across the centers especially with regard to Dravet syndrome, infantile spasms in TSC, and Unverricht Lundborg / Unverricht-like disease. Available, widely used targeted therapies included everolimus in TSC and immunosuppressive therapies in autoimmune encephalitis. Screening for comorbidities was routinely done, but specific treatment protocols were lacking in most centers.
Significance: The survey summarizes the current clinical practice for selected rare epilepsies in tertiary European epilepsy centers and demonstrates consistency as well as heterogeneity in the treatment, underscoring the need for controlled trials and recommendations. The survey also provides estimates for potential participants of clinical trials recruited via EpiCARE, emphasizing the great potential of Reference Networks for future studies to evaluate new targeted therapies and to identify novel biomarkers.info:eu-repo/semantics/publishedVersio
Public Goods Access and Juvenile Sex Ratios in Rural India: Evidence from the 1991 and 2001 Village Census Data
Chapter 14 Electrical Properties of Soils
This chapter discusses the electric and electromagnetic methods that are used to evaluate the electrical properties of soils. Electric techniques exploit the flow of a steady-state current in the subsurface, while electromagnetic methods rely on the phenomenon of electromagnetic induction and the wave character of the electromagnetic field. The electrical techniques and associated properties are: (a) spontaneous potential methods in which the formation of water resistivity is determined; (b) resistivity methods in which the apparent resistivity can be calculated using Wenner, Schlumberger, and dipole-dipole arrays; and (c) specific conductivity methods in which the soil-specific conductivity is calculated by incorporating in the analysis of soil geometric factors, such as fabric anisotropy, tortuosity, resistance to solid matrix, bulk fluid phase, and electric double layer. Various parameters that influence the measured electrical properties are also presented, such as the nature of the soil composition (particle size distribution, mineralogy), soil structure (porosity, pore size distribution, connectivity, and anisotropy), moisture content, temperature, concentration of dissolved species in the pore-solution, wet-dry cycles, age of contaminants, and mineral formation due to biodegradation. Finally, the extraction of aquifer hydraulic properties such as porosity and hydraulic conductivity, from the measured electrical properties is discussed
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