42 research outputs found
The Scottish Early Rheumatoid Arthritis (SERA) Study:an inception cohort and biobank
Background:
The Scottish Early Rheumatoid Arthritis (SERA) study is an inception cohort of rheumatoid (RA) and undifferentiated arthritis (UA) patients that aims to provide a contemporary description of phenotype and outcome and facilitate discovery of phenotypic and prognostic biomarkers
Methods:
Demographic and clinical outcome data are collected from newly diagnosed RA/UA patients every 6Â months from around Scotland. Health service utilization data is acquired from Information Services Division, NHS National Services Scotland. Plain radiographs of hands and feet are collected at baseline and 12Â months. Additional samples of whole blood, plasma, serum and filtered urine are collected at baseline, 6 and 12Â months
Results:
Results are available for 1073 patients; at baseline, 76Â % were classified as RA and 24Â % as UA. Median time from onset to first review was 163Â days (IQR97-323). Methotrexate was first-line DMARD for 75Â % patients. Disease activity, functional ability and health-related quality of life improved significantly between baseline and 24Â months, however the proportion in any employment fell (51 to 38Â %, pâ=â0.0005). 24Â % patients reported symptoms of anxiety and/or depression at baseline. 35/391 (9Â %) patients exhibited rapid radiographic progression after 12Â months. The SERA Biobank has accrued 60,612 samples
Conclusions:
In routine care, newly diagnosed RA/UA patients experience significant improvements in disease activity, functional ability and health-related quality of life but have high rates of psychiatric symptoms and declining employment rates. The co-existence of a multi-domain description of phenotype and a comprehensive biobank will facilitate multi-platform translational research to identify predictive markers of phenotype and prognosis
Harnessing Wicked Problems in Multi-stakeholder Partnerships
Despite the burgeoning literature on the governance and impact of cross-sector partnerships in the past two decades, the debate on how and when these collaborative arrangements address globally relevant problems and contribute to systemic
change remains open. Building upon the notion of wicked problems and the literature on governing such wicked problems, this paper defines
harnessing problems in multi-stakeholder partnerships (MSPs) as the approach of taking into account the nature of the problem and of organizing governance processes accordingly. The paper develops an innovative analytical framework that conceptualizes MSPs in terms of three governance processes (deliberation, decision-making and enforce-ment) harnessing three key dimensions of wicked problems (knowledge uncertainty, value conflict and dynamic complexity).
The Roundtable on Sustainable Palm Oil provides an illustrative case study on how this analytical framework describes and explains organizational change in partnerships from a problem-based perspective. The framework can be used to better understand and predict the complex relationships between MSP governance processes, systemic change and societal problems, but also as a guiding tool in (re-)organizing governance processes to continuously re-assess the problems over time and address them accordingly
Legal linked data ecosystems and the rule of law
This chapter introduces the notions of meta-rule of law and socio-legal ecosystems to both foster and regulate linked democracy. It explores the way of stimulating innovative regulations and building a regulatory quadrant for the rule of law. The chapter summarises briefly (i) the notions of responsive, better and smart regulation; (ii) requirements for legal interchange languages (legal interoperability); (iii) and cognitive ecology approaches. It shows how the protections of the substantive rule of law can be embedded into the semantic languages of the web of data and reflects on the conditions that make possible their enactment and implementation as a socio-legal ecosystem. The chapter suggests in the end a reusable multi-levelled meta-model and four notions of legal validity: positive, composite, formal, and ecological
Synthesising Corporate Responsibility on Organisational and Societal Levels of Analysis: An Integrative Perspective
This article develops an integrative perspective on corporate responsibility by synthesising competing perspectives on the responsibility of the corporation at the organisational and societal levels of analysis. We review three major corporate responsibility perspectives, which we refer to as economic, critical, and politico-ethical. We analyse the major potential uses and pitfalls of the perspectives, and integrate the debate on these two levels. Our synthesis concludes that when a society has a robust division of moral labour in place, the responsibility of a corporation may be economic (as suggested under the economic perspective) without jeopardising democracy and sustainability (as reported under the critical perspective). Moreover, the economic role of corporations neither signifies the absence of deliberative democratic mechanisms nor business practices extending beyond compliance (as called for under the politico-ethical perspective). The study underscores the value of integrating different perspectives and multiple levels of analysis to present comprehensive descriptions and prescriptions of the responsibility phenomenon