Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks

A call from the EU for the set-up of European Reference Networks (ERNs) is expected to be launched in the first quarter of 2016. ERNs are intended to improve the care for patients with low prevalent or rare diseases throughout the EU by, among other things, facilitating the pooling and exchange of experience and knowledge and the development of protocols and guidelines. In the past, for example where costly orphan drugs have been concerned, industry has played an important role in facilitating consensus meetings and publication of guidelines. The ERNs should provide a unique opportunity for healthcare professionals and patients to lead these activities in an independent way. However, currently costs for networking activities are not to be covered by EU funds and alternative sources of funding are being explored. There is growing concern that any involvement of the industry in the funding of ERNs and their core activities may create a risk of undue influence. To date, the European Commission has not been explicit in how industry will be engaged in ERNs. We believe that public funding and a conflict of interest policy are needed at the level of the ERNs, Centers of Expertise (CEs), healthcare professionals and patient organizations with the aim of maintaining scientific integrity and independence. Specific attention is needed where it concerns the development of clinical practice guidelines. A proposal for a conflict of interest policy is presented, which may support the development of a framework to facilitate collaboration, safeguard professional integrity and to establish and maintain public acceptability and trust among patients, their organizations and the general public

Impact of clinical phenotypes on management and outcomes in European atrial fibrillation patients: a report from the ESC-EHRA EURObservational Research Programme in AF (EORP-AF) General Long-Term Registry

Background: Epidemiological studies in atrial fibrillation (AF) illustrate that clinical complexity increase the risk of major adverse outcomes. We aimed to describe European AF patients\u2019 clinical phenotypes and analyse the differential clinical course. Methods: We performed a hierarchical cluster analysis based on Ward\u2019s Method and Squared Euclidean Distance using 22 clinical binary variables, identifying the optimal number of clusters. We investigated differences in clinical management, use of healthcare resources and outcomes in a cohort of European AF patients from a Europe-wide observational registry. Results: A total of 9363 were available for this analysis. We identified three clusters: Cluster 1 (n = 3634; 38.8%) characterized by older patients and prevalent non-cardiac comorbidities; Cluster 2 (n = 2774; 29.6%) characterized by younger patients with low prevalence of comorbidities; Cluster 3 (n = 2955;31.6%) characterized by patients\u2019 prevalent cardiovascular risk factors/comorbidities. Over a mean follow-up of 22.5 months, Cluster 3 had the highest rate of cardiovascular events, all-cause death, and the composite outcome (combining the previous two) compared to Cluster 1 and Cluster 2 (all P <.001). An adjusted Cox regression showed that compared to Cluster 2, Cluster 3 (hazard ratio (HR) 2.87, 95% confidence interval (CI) 2.27\u20133.62; HR 3.42, 95%CI 2.72\u20134.31; HR 2.79, 95%CI 2.32\u20133.35), and Cluster 1 (HR 1.88, 95%CI 1.48\u20132.38; HR 2.50, 95%CI 1.98\u20133.15; HR 2.09, 95%CI 1.74\u20132.51) reported a higher risk for the three outcomes respectively. Conclusions: In European AF patients, three main clusters were identified, differentiated by differential presence of comorbidities. Both non-cardiac and cardiac comorbidities clusters were found to be associated with an increased risk of major adverse outcomes

PEGASE, an infrared interferometer to study stellar environments and low mass companions around nearby stars

PEGASE is a mission dedicated to the exploration of the environment (including habitable zone) of young and solar-type stars (particularly those in the DARWIN catalogue) and the observation of low mass companions around nearby stars. It is a space interferometer project composed of three free flying spacecraft, respectively featuring two 40 cm siderostats and a beam combiner working in the visible and near infrared. It has been proposed to ESA as an answer to the first ``Cosmic Vision'' call for proposals, as an M mission. The concept also enables full-scale demonstration of space nulling interferometry operation for DARWIN

Searches after Gravitational Waves Using ARizona Observatories (SAGUARO): Observations and Analysis from Advanced LIGO/Virgo's Third Observing Run

With the conclusion of the third observing run for Advanced LIGO/Virgo (O3), we present a detailed analysis of both triggered and serendipitous observations of 17 gravitational-wave (GW) events (7 triggered and 10 purely serendipitous) from the Searches After Gravitational-waves Using ARizona Observatories (SAGUARO) program. We searched a total of 4935 deg2 down to a median 5σ transient detection depth of 21.1 AB mag using the Mt. Lemmon 1.5 m telescope, the discovery engine for SAGUARO. In addition to triggered events within 24 hr, our transient search encompassed a time interval following GW events of <120 hr, providing observations on ∼1/2 of the events accessible to the Mt. Lemmon 1.5 m telescope. We covered 2.1%-86% of the LVC total probability (P total) for individual events, with a median P total ≈ 8% within <120 hr. Following improvements to our pipeline and the addition of serendipitous observations, we find a total of seven new optical candidates across five GW events, which we are unable to rule out after searching for additional information and comparing to kilonova models. Using both publicly available and our own late-time data, we investigated a total of 252 optical candidates for these 17 events, finding that only 65% were followed up in some capacity by the community. Of the total 252 candidates, we are able to rule out an additional 12 previously reported counterpart candidates. In light of these results, we discuss lessons learned from the SAGUARO GW counterpart search. We discuss how community coordination of observations and candidate follow-up, as well as the role of archival data, are crucial to improving the efficiency of follow-up efforts and preventing unnecessary duplication of effort with limited electromagnetic resources. © 2021. The American Astronomical Society. All rights reserved..Immediate accessThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]