An update on the long-term outcomes of prenatal dexamethasone treatment in congenital adrenal hyperplasia

First-trimester prenatal treatment with glucocorticoid (GC) dexamethasone (DEX) in pregnancies at risk for classic congenital adrenal hyperplasia (CAH) is associated with ethical dilemmas. Though effective in reducing virilisation in g irls with CAH, it entails exposure to high doses of GC in fetuses that do not benefit from the treatment. The current paper provides an update on the literature on outcomes of prenatal DEX treatment in CAH cases and unaffected subjects. Long-term follow-up resear ch is still needed to determine treatment safety. In addition, advances in early prenatal diagnostics for CAH and sex-typing as well as studies assessing dosing effects of DE X may avoid unnecessary treatment and improve treatment safety

A generic emergency protocol for patients with inborn errors of metabolism causing fasting intolerance: A retrospective, single-center study and the generation of www.emergencyprotocol.net

Patients with inborn errors of metabolism causing fasting intolerance can experience acute metabolic decompensations. Long-term data on outcomes using emergency letters are lacking. This is a retrospective, observational, single-center study of the use of emergency letters based on a generic emergency protocol in patients with hepatic glycogen storage diseases (GSD) or fatty acid oxidation disorders (FAOD). Data on hospital admissions, initial laboratory results, and serious adverse events were collected. Subsequently, the website www.emergencyprotocol.net was generated in the context of the CONNECT MetabERN eHealth project following multiple meetings, protocol revisions, and translations. Representing 470 emergency protocol years, 127 hospital admissions were documented in 54/128 (42%) patients who made use of emergency letters generated based on the generic emergency protocol. Hypoglycemia (here defined as glucose concentration 5 years. Convulsions, coma, or death was not documented. By providing basic information, emergency letters for individual patients with hepatic GSD or the main FAOD can be generated at www.emergencyprotocol.net, in nine different languages. Generic emergency protocols are safe and easy for home management by the caregivers and the first hour in-hospital management to prevent metabolic emergencies in patients with hepatic GSD and medium-chain Acyl CoA dehydrogenase deficiency. The website www.emergencyprotocol.net is designed to support families and healthcare providers to generate personalized emergency letters for patients with hepatic GSD and the main FAOD

Research activity and capability in the European reference network MetabERN

BACKGROUND: MetabERN is one of the 24 European Reference Networks created according to the European Union directive 2011/24/EU on patient's rights in cross border healthcare. MetabERN associates 69 centres in 18 countries, which provide care for patients with Hereditary Metabolic Diseases, and have the mission to reinforce research and provide training for health professionals in this field. MetabERN performed a survey in December 2017 with the aim to produce an overview documenting research activities and potentials within the network. As the centres are multidisciplinary, separated questionnaires were sent to the clinical, university and laboratory teams. Answers were received from 52 out of the 69 centres of the network, covering 16 countries. A descriptive analysis of the information collected is presented. RESULTS: The answers indicate a marked interest of the respondents for research, who expressed high motivation and commitment, and estimated that the conditions to do research in their institution were mostly satisfactory. They are active in research, which according to several indicators, is competitive and satisfies standards of excellence, as well as the education programs offered in the respondent's universities. Research in the centres is primarily performed in genetics, pathophysiology, and epidemiology, and focuses on issues related to diagnosis. Few respondents declared having activity in human and social sciences, including research on patient's quality of life, patient's awareness, or methods for social support. Infrastructures offering services for medical research were rarely known and used by respondents, including national and international biobanking platforms. In contrast, respondents often participate to patient registries, even beyond their specific field of interest. CONCLUSIONS: Taken as a whole, these results provide an encouraging picture of the research capacities and activities in the MetabERN network, which, with respect to the number and representativeness of the investigated centres, gives a comprehensive picture of research on Hereditary Metabolic Diseases in Europe, as well as the priorities for future actions. Marginal activity in human and social sciences points out the limited multidisciplinary constitution of the responding teams with possible consequences on their current capability to participate to patient's empowerment programs and efficiently collaborate with patient's advocacy groups

Incentivizing the Dynamic Workforce: Learning Contracts in the Gig-Economy

In principal-agent models, a principal offers a contract to an agent to perform a certain task. The agent exerts a level of effort that maximizes her utility. The principal is oblivious to the agent's chosen level of effort, and conditions her wage only on possible outcomes. In this work, we consider a model in which the principal is unaware of the agent's utility and action space. She sequentially offers contracts to identical agents, and observes the resulting outcomes. We present an algorithm for learning the optimal contract under mild assumptions. We bound the number of samples needed for the principal obtain a contract that is within $\epsilon$ of her optimal net profit for every $\epsilon>0$

Zusammenhang zwischen gesunder Ernährung und aktuellem Beziehungsstatus

Die vorliegende Studie ist Teil eines größeren Projekts im Rahmen eines forschungsorientierten Praktikums. Ziel der übergeordneten Studie ist es, eine Vielzahl psychologischer, sozialer und verhaltensbezogener Variablen zu erfassen, um deren Zusammenhänge besser zu verstehen. Gemessen werden u.a. die Variablen Einsamkeit und soziale Isolation, Einstellung zu und Wunsch nach sozialer Berührung, Essverhalten und soziodemografische Angaben. Die Studie ist als longitudinales ambulantes Assessment über 7 Tage konzipiert. Zu Beginn findet ein Screeningtermin im Labor statt, bei dem unter anderem das Körpergewicht erfasst, die Einverständniserklärung eingeholt und die verwendeten Apps erklärt werden (Mpath für EMA-Erhebungen, Yazio zur Kalorienmessung). Im Anschluss füllen die Teilnehmenden am Tag vor Beginn der EMA-Phase Online-Baselinefragebögen aus. Während der folgenden sieben Tage werden täglich fünf EMA-Messungen per Smartphone durchgeführt. Nach Abschluss erfolgt eine kurze Post-Erhebung über Online-Fragebögen. Für die Teilnahme erhalten die Teilnehmenden eine Vergütung in Höhe von 40 €, sofern sie mindestens 4 von 5 EMA-Messungen pro Tag absolviert haben. Im Rahmen dieser Teilstudie liegt der Fokus auf dem Zusammenhang zwischen der gesunden Ernährung und dem aktuellen Beziehungsstatus. Konkret wird untersucht, ob sich Personen in romantischen Beziehungen hinsichtlich ihres Obst- und Gemüsekonsums von alleinstehenden Personen unterscheiden. Grundlage hierfür ist die Annahme, dass romantische Beziehungen gesundheitsförderliche Verhaltensweisen unterstützen können. Die abhängige Variable (gesunde Ernährung) wird über ein Einzelitem in Baseline-Fragebögen operationalisiert. Als unabhängige Variable dient der dichotom erfasste aktuelle Beziehungsstatus (ebenfalls in Baseline-Fragebögen gemessen). Es wird erwartet, dass Personen in einer romantischen Beziehung häufiger Obst und Gemüse konsumieren als alleinstehende Personen