The uncertain relationship between transparency and accountability revisited through four Swiss cases

Accountability and transparency are of growing importance in contemporary governance. The academic literature have broadly studied the two concepts separately, defining and redefining them, and including them into various framework, sometimes mistakenly using them as synonyms. The relationship between the two concepts has, curiously, only been studied by a few scholars with preliminary approaches. This theoretical paper will focus on both concepts, trying first to describe them taking into account the various evolutions in the literature and the recent evolutions as well as the first attempts to link the two concepts. In order to show a new approach linking the concepts, four cases from the Swiss context will be portrayed and will demonstrate the necessity to reconsider the relationship between transparency and accountability. Consequently, a new framework, based on Fox's framework (2007) will be presented and theoretically delimited

Effects of rare kidney diseases on kidney failure: a longitudinal analysis of the UK National Registry of Rare Kidney Diseases (RaDaR) cohort

\ua9 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 licenseBackground: Individuals with rare kidney diseases account for 5–10% of people with chronic kidney disease, but constitute more than 25% of patients receiving kidney replacement therapy. The National Registry of Rare Kidney Diseases (RaDaR) gathers longitudinal data from patients with these conditions, which we used to study disease progression and outcomes of death and kidney failure. Methods: People aged 0–96 years living with 28 types of rare kidney diseases were recruited from 108 UK renal care facilities. The primary outcomes were cumulative incidence of mortality and kidney failure in individuals with rare kidney diseases, which were calculated and compared with that of unselected patients with chronic kidney disease. Cumulative incidence and Kaplan–Meier survival estimates were calculated for the following outcomes: median age at kidney failure; median age at death; time from start of dialysis to death; and time from diagnosis to estimated glomerular filtration rate (eGFR) thresholds, allowing calculation of time from last eGFR of 75 mL/min per 1\ub773 m2 or more to first eGFR of less than 30 mL/min per 1\ub773 m2 (the therapeutic trial window). Findings: Between Jan 18, 2010, and July 25, 2022, 27 285 participants were recruited to RaDaR. Median follow-up time from diagnosis was 9\ub76 years (IQR 5\ub79–16\ub77). RaDaR participants had significantly higher 5-year cumulative incidence of kidney failure than 2\ub781 million UK patients with all-cause chronic kidney disease (28% vs 1%; p<0\ub70001), but better survival rates (standardised mortality ratio 0\ub742 [95% CI 0\ub732–0\ub752]; p<0\ub70001). Median age at kidney failure, median age at death, time from start of dialysis to death, time from diagnosis to eGFR thresholds, and therapeutic trial window all varied substantially between rare diseases. Interpretation: Patients with rare kidney diseases differ from the general population of individuals with chronic kidney disease: they have higher 5-year rates of kidney failure but higher survival than other patients with chronic kidney disease stages 3–5, and so are over-represented in the cohort of patients requiring kidney replacement therapy. Addressing unmet therapeutic need for patients with rare kidney diseases could have a large beneficial effect on long-term kidney replacement therapy demand. Funding: RaDaR is funded by the Medical Research Council, Kidney Research UK, Kidney Care UK, and the Polycystic Kidney Disease Charity

Effects of rare kidney diseases on kidney failure: a longitudinal analysis of the UK National Registry of Rare Kidney Diseases (RaDaR) cohort

Background Individuals with rare kidney diseases account for 5–10% of people with chronic kidney disease, but constitute more than 25% of patients receiving kidney replacement therapy. The National Registry of Rare Kidney Diseases (RaDaR) gathers longitudinal data from patients with these conditions, which we used to study disease progression and outcomes of death and kidney failure. Methods People aged 0–96 years living with 28 types of rare kidney diseases were recruited from 108 UK renal care facilities. The primary outcomes were cumulative incidence of mortality and kidney failure in individuals with rare kidney diseases, which were calculated and compared with that of unselected patients with chronic kidney disease. Cumulative incidence and Kaplan–Meier survival estimates were calculated for the following outcomes: median age at kidney failure; median age at death; time from start of dialysis to death; and time from diagnosis to estimated glomerular filtration rate (eGFR) thresholds, allowing calculation of time from last eGFR of 75 mL/min per 1·73 m2 or more to first eGFR of less than 30 mL/min per 1·73 m2 (the therapeutic trial window). Findings Between Jan 18, 2010, and July 25, 2022, 27 285 participants were recruited to RaDaR. Median follow-up time from diagnosis was 9·6 years (IQR 5·9–16·7). RaDaR participants had significantly higher 5-year cumulative incidence of kidney failure than 2·81 million UK patients with all-cause chronic kidney disease (28% vs 1%; p<0·0001), but better survival rates (standardised mortality ratio 0·42 [95% CI 0·32–0·52]; p<0·0001). Median age at kidney failure, median age at death, time from start of dialysis to death, time from diagnosis to eGFR thresholds, and therapeutic trial window all varied substantially between rare diseases. Interpretation Patients with rare kidney diseases differ from the general population of individuals with chronic kidney disease: they have higher 5-year rates of kidney failure but higher survival than other patients with chronic kidney disease stages 3–5, and so are over-represented in the cohort of patients requiring kidney replacement therapy. Addressing unmet therapeutic need for patients with rare kidney diseases could have a large beneficial effect on long-term kidney replacement therapy demand. Funding RaDaR is funded by the Medical Research Council, Kidney Research UK, Kidney Care UK, and the Polycystic Kidney Disease Charity

The complex relationship between transparency and accountability : a synthesis and contribution to existing frameworks

Accountability and transparency are of growing importance in contemporary governance. The academic literature has broadly studied the two concepts separately, defining and redefining them, putting them into various frameworks, and sometimes mistakenly using them as synonyms. Curiously, the relationship between the two concepts has been studied only by a few scholars with preliminary approaches. This theoretical article focuses on both concepts, attempting first to describe them, taking into account the various evolutions in the literature and recent developments, and also the first attempts to link the two concepts. In order to show a new approach linking the concepts, theoretical situations in which the concepts are linked are portrayed, demonstrating the need to reconsider the relationship between transparency and accountability. Consequently, a new framework amending the most recent approaches is presented, theoretically delimited and exemplified through practical cases

Densification and shaping of pure Cu-BTC powders using a solid-state chemical transformation

Abstract MOFs are a class of porous crystalline materials whose unique properties have led to applicability in several fields ranging from gas adsorption to drug delivery. Despite their high potential, MOFs are usually found as fine powders, a property that can limit their use in industrial applications. Here, a novel approach is proposed to form densified Cu-MOF (Cu-BTC) powders and monoliths using 1,2-ethanedisulfonic acid (EDSA) as a densification agent. A MOF/EDSA mixture was heated to ∼150 °C; the molten EDSA not only promotes the growth of larger MOF crystallites, but also stimulates condensation reactions between the carboxylate-based MOF ligands, further binding the particles together. When this reaction was done in a stainless-steel die under pressure MOF-based monoliths could also be formed. Notably, using this approach, the MOF had a higher density, significantly improving the volumetric CO2 adsorption capacity. We believe this contribution provides the basis for future work wherein the intrinsic MOF particle surfaces can be selectively engineered to improve their properties towards shaping for industrial applications.</jats:p

A latest Llandovery to latest Ludlow high-resolution biostratigraphy based on the Silurian of Gotland - a summary

A succession of 26 conodont zones and 63 successive subzones and conodont faunas have been identified in the exposed latest Landovery to latest Ludlow strata of Gotland, Sweden. All zones, and several of the subzones and faunas, have been identified elsewhere on Baltica as well as on other palaeocontinents, indicating that this zonation serves well as the standard zonation for calcareous successions. The average duration of the 24 Wenlock and Ludlow zones was 396+/-208 ka, using the latest radiometric timescale. However, most zones and subzones formed during the widely recognised Silurian oceanic events correspond to less time per unit - in the order of 30 to 100 ka - and most of those formed during intervening episodes correspond to a few 100 ka. The average duration of the 61 Wenlock and Ludlow zones, subzones, and faunas was only 156+/-82 ka, i.e., among the highest biostratigraphical resolution available for Phanerozoic epochs. On Gotland the combined known maximum thickness of the strata has increased to more than 750 m