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Introduction The EPHOR project is constructing a mega cohort for pooled analysis of data from multiple European cohort studies of occupation and health. The objective is to provide new evidence of the impact of occupational exposures on the risk of major non-communicable diseases, through systematic and agnostic analyses across the life-course. Materials and Methods Cohorts are registered in an online inventory. Cohort data and occupational information are being harmonised and documented in an online variable catalogue, and will be linked with a newly developed European Job-Exposure Matrix (EuroJEM) characterising multiple: chemical and particle, ergonomic, physical, and psychosocial exposures and precariousness. Cohort information on working time will also be harmonised. Knowledge gaps on occupational exposures in relation to major non-communicable diseases were identified. Both meta-analysis and decentralized analysis approaches will be used, as appropriate. Ethics approval is provided by all relevant committees. Results Currently 29 European cohorts covering a broad range of countries as well as multi-country studies are participating, containing more than 20 million participants. Cohort designs range from smaller scale studies including hundreds to thousands of workers with detailed exposure and/or outcome characterisation, to large-scale general population cohorts including multiple millions of participants with occupational information captured using registry-based methods. Cohorts were largely established and followed-up during the 2000s through the current time, though some were established earlier. Occupational information primarily entails the working lifetime or follow-up period. Outcome information includes disease incidence, disability, and mortality. In some studies, information about genetics, epigenetics, other biomarkers and clinical/functional evaluations is available. Analysis will address knowledge gaps of cancer, respiratory, cardiovascular/metabolic, and neurodegenerative diseases, mental and musculoskeletal disorders, and work participation. Conclusions We expect the mega cohort will be a useful long-term resource to study relationships of occupations, work-related exposures and health in Europe to inform policy and prevention.

Objective: Birth cohorts collect valuable and under-utilized information on employment and health of parents before and during pregnancy, at birth, and sometimes after birth. In this discussion paper, we examine how these data could be exploited to study the complex relationships and interactions between parenthood, work, and health among parents themselves. Methods: Using a web-based database of birth cohorts, we summarize information on maternal employment and health conditions and other potentially related variables in cohorts spread throughout Europe. This provided information on what data are available and could be used in future studies, and what was missing if specific questions are to be addressed, exploiting the opportunity to explore work-health associations across heterogenous geographical and social contexts. Results: We highlight the many potentialities provided by birth cohorts and identify gaps that need to be addressed to adopt a life-course approach and investigate topics specific to the peri-pregnancy period, such as psychosocial aspects. We address the technical difficulties implied by data harmonization and the ethical challenges related to the repurposing of data, and provide scientific, ecological and economic arguments in favor of improving the value of data already available as a result of a serious investment in human and material resources. Conclusions: There is a hidden treasure in birth cohorts that deserves to be brought out to study the relationships between employment and health among working parents in a time when the boundaries between work and life are being stretched more than ever before. This paper was written within the scope of OMEGANET, supported by COST (European Cooperation in Science and Technology), project CA16216: Network on the Coordination and Harmonisation of European Occupational Cohorts. Maribel Casas holds a Miguel Servet fellowship (CP16/00128) funded by Instituto de Salud Carlos III and co-funded by European Social Fund “Investing in your future”. We acknowledge support from the Spanish Ministry of Science and Innovation through the “Centro de Excelencia Severo Ochoa 2019-2023” Program (2018-000806-S), and support from the Generalitat de Catalunya through the CERCA Program. Milena Maule’s work was supported by the Compagnia di San Paolo “Bando per il finanziamento ex-post di Progetti di Ricerca di Ateneo – Anno 2018”. Ghislaine Scelo’s work was supported by a LifeCycle fellowship (Grant Agreement No. 733206 LifeCycle). Working life, health and well-being of parents: a joint effort to uncover hidden treasures in European birth cohorts.

IntroductionThe systematic collection of electronic patient-reported outcome (ePRO) in the routine care of patients with chronic haematological malignancies such as chronic lymphocytic leukaemia (CLL) and myelodysplasia syndromes (MDS) can constitute a very ambitious but worthwhile challenge. MyPal is a Horizon 2020 Research & Innovation Action aiming to meet this challenge and foster palliative care for patients with CLL or MDS by leveraging ePRO systems to adapt to the personal needs of patients and caregiver(s).Methods and analysisIn this interventional randomised trial, 300 patients with CLL or MDS will be recruited across Europe. Patients will be randomly allocated to early palliative care using the MyPal system (n=150) versus standard care including general palliative care if needed (n=150). Patients in the experimental arm will be given access to the MyPal digital health platform which consists of purposely designed software available on smartphones and/or tablets. The platform entails different functionalities including physical and psychoemotional symptom reporting via regular questionnaire completion, spontaneous self-reporting, motivational messages, medication management and a personalised search engine for health information. Data on patients’ activity (daily steps and sleep quality) will be automatically collected via wearable devices.Ethics and disseminationThe integration of ePROs via mobile applications has raised ethical concerns regarding inclusion criteria, information provided to participants, free and voluntary consent, and respect for their autonomy. These have been carefully addressed by a multidisciplinary team. Data processing, dissemination and exploitation of the study findings will take place in full compliance with European Union data protection law. A participatory design was adopted in the development of the digital platform involving focus groups and discussions with patients to identify needs and preferences. The protocol was approved by the ethics committees of San Raffaele (8/2020), Thessaloniki ‘George Papanikolaou’ Hospital (849), Karolinska Institutet (20.10.2020), University General Hospital of Heraklion (07/15.4.2020) and University of Brno (01-120220/EK).Trial registration numberNCT04370457.

Η ακεραιότητα στην έρευνα αποτελεί οργανικό και αναπόσπαστο τμήμα της ηθικής στην επιστημονική έρευνα. Η αξία της επιστημονικής έρευνας εξαρτάται άμεσα από το βαθμό ευθυγράμμισής της με τους κανόνες της ακεραιότητας στην έρευνα. Αυτή η άρρηκτη σχέση αξίας και ακεραιότητας της επιστημονικής έρευνας δεν αντικατοπτρίζει μόνο την προσήλωσή της στην εφαρμογή της ορθής επιστημονικής μεθόδου, αλλά και την αποδοχή της από το σύνολο της κοινωνίας. Στην παρούσα εργασία παρουσιάζεται μία επισκόπηση της οργάνωσης των θεσμών που σχετίζονται με την τήρηση της ακεραιότητας στην έρευνα σε διεθνές, ευρωπαϊκό και εθνικό επίπεδο. Γίνεται καταγραφή της κατάστασης που επικρατεί στην Ελλάδα σε επίπεδο Ανώτατων Εκπαιδευτικών Ιδρυμάτων, Ερευνητικών Κέντρων και Επιτροπών. Ακόμα, περιγράφονται οι πρόσφατες ενέργειες του Εθνικού Μετσόβιου Πολυτεχνείου, καθώς και η πρωτοβουλία του δικτύου EARTHnet για τη θεσμοθέτηση κοινώς αποδεκτών κανόνων δεοντολογίας σε εθνικό επίπεδο., Research integrity is an essential and integral part of scientific research ethics. It is commonly accepted that the value of scientific research vitally depends on the fulfillment of research integrity codes of conduct. The unbreakable linkage (relation) between research value and research integrity does not reflect only its attachment to the application of proper scientific method but also its acceptance from the society. In this work we present a survey on the organization of the institutions of research integrity in international, European and national level. Emphasis is given in the description of the present state in Greece in the level of Higher Educational Institutes, Research Centers and Committees. Also, we focus on the actions taken from National Technical University of Athens, as well as the initiative from EARTHnet network and their efforts for institutionalization of a common code of conduct in scientific research at a national level.