16 research outputs found
Consensus Recommendations for Clinical Outcome Assessments and Registry Development in Ataxias: Ataxia Global Initiative (AGI) Working Group Expert Guidance
To accelerate and facilitate clinical trials, the Ataxia Global Initiative (AGI) was established as a worldwide research platform for trial readiness in ataxias. One of AGI’s major goals is the harmonization and standardization of outcome assessments. Clinical outcome assessments (COAs) that describe or reflect how a patient feels or functions are indispensable for clinical trials, but similarly important for observational studies and in routine patient care. The AGI working group on COAs has defined a set of data including a graded catalog of COAs that are recommended as a standard for future assessment and sharing of clinical data and joint clinical studies. Two datasets were defined: a mandatory dataset (minimal dataset) that can ideally be obtained during a routine clinical consultation and a more demanding extended dataset that is useful for research purposes. In the future, the currently most widely used clinician-reported outcome measure (ClinRO) in ataxia, the scale for the assessment and rating of ataxia (SARA), should be developed into a generally accepted instrument that can be used in upcoming clinical trials. Furthermore, there is an urgent need (i) to obtain more data on ataxia-specific, patient-reported outcome measures (PROs), (ii) to demonstrate and optimize sensitivity to change of many COAs, and (iii) to establish methods and evidence of anchoring change in COAs in patient meaningfulness, e.g., by determining patient-derived minimally meaningful thresholds of change
Posters
Silica-based nanocomposite membranes via the sol gel process of polyethoxysiloxane within a sulfonated poly(ether-ether-ketone) matrix: morphology and proton mobility Von der Fakultät für Mathematik, Informatik und Naturwissenschafte
Il banditismo d’onore in Corsica nell’immaginario di viaggio francese (1815-1915)
This paper aims at reconstructing the representations of Corsican banditry given by French travelers during the 19th century, taking into account travel guides and tourists reports. Between 1815 and 1915 an increasing interest in Corsica takes place; the island is perceived as a wild and archaic spot, outside civilization. French travelers incorporate the romantic idealization and literary figure of the bandit of honor, to whom they attribute positive morale values. The representation of banditry provided by travelers is closely related to the representation of the Corsican people. The banditisme honoraire will become the island’s main tourist object, so as to transform the legendary Antonio Bellacoscia in bandit decoratif
Napoli post-unitaria. La testimonianza di una ‘comédienne’ tra stereotipo e realtà
Lo scopo del presente articolo non è quello di fornire un’analisi precisa della vita a Napoli dopo poco più di un decennio di storia unitaria, bensì quello di fornire una testimonianza fuori dagli schemi su alcuni aspetti della città partenopea e sull’Italia in generale. Attraverso la testimonianza di un’attrice francese, Marie Colombier (1841-1910)1, in tournée a Napoli nella seconda metà degli anni ’70 dell’Ottocento, cercheremo di capire quanto dello stereotipo comunemente condiviso sul nostro paese e quanto, invece, di reale si possa congiungere in uno sguardo “straniero”
