Getting your DUCs in a row - standardising the representation of Digital Use Conditions.

Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standard to structure and manage these use conditions is a complex and challenging task. This is exemplified by a near unlimited range of asset types, a high variability of applicable conditions, and differing applications at the individual or collective level. Furthermore, the specifics and granularity required are likely to vary depending on the ultimate contexts of use. All these factors confound alignment of institutional missions, funding objectives, regulatory and technical requirements to facilitate effective sharing. The presented work highlights the complexity and diversity of the problem, reviews the current state of the art, and emphasises the need for a flexible and adaptable approach. We propose Digital Use Conditions (DUC) as a framework that addresses these needs by leveraging existing standards, striking a balance between expressiveness versus ambiguity, and considering the breadth of applicable information with their context of use.

Common conditions of use elements. Atomic concepts for consistent and effective information governance.

Myriad policy, ethical and legal considerations underpin the sharing of biological resources, implying the need for standardised and yet flexible ways to digitally represent diverse 'use conditions'. We report a core lexicon of terms that are atomic, non-directional 'concepts of use', called Common Conditions of use Elements. This work engaged biobanks and registries relevant to the European Joint Programme for Rare Diseases and aimed to produce a lexicon that would have generalised utility. Seventy-six concepts were initially identified from diverse real-world settings, and via iterative rounds of deliberation and user-testing these were optimised and condensed down to 20 items. To validate utility, support software and training information was provided to biobanks and registries who were asked to create Sharing Policy Profiles. This succeeded and involved adding standardised directionality and scope annotations to the employed terms. The addition of free-text parameters was also explored. The approach is now being adopted by several real-world projects, enabling this standard to evolve progressively into a universal basis for representing and managing conditions of use.

Síndrome febril prolongado y alteraciones hepáticas / Persistent fever and liver alterations

La infección por citomegalovirus (CMV) debe ser investigada en pacientes sanos con cuadro pseudogripal consistente en fiebre, astenia, aumento inexplicado de los niveles de transaminasas y linfomonocitosis periférica. Es un cuadro relativamente frecuente, por lo que puede pasar totalmente desapercibido o con escasas manifestaciones clínicas, sobre todo en el paciente inmunocompetente. Los síntomas faríngeos y adenomegalias son menos frecuentes que en la infección mononucleósica por virus de Epstein-Barr. Presentamos el caso de un paciente sin factores de riesgo que presenta un cuadro febril prolongado y alteraciones hepáticas, con evolución espontánea a la normalización y serología compatible con infección por CMV(AU)

Cytomegalovirus (CMV) infection should be investigated in healthy patients who have flu-like symptoms consisting of fever, fatigue, unexplained increase of transaminases and peripheral lymphomonocytosis. These are relatively common symptoms so they may pass completely unnoticed or with few clinical manifestations, especially in immunocompetent patients. Pharyngeal symptoms and swollen lymph nodes are less frequent than in mononucleosis infection caused by Epstein-Barr virus. We report a case of a patient with no risk factors who presented with persistent fever and liver alterations, which resolved spontaneously and with serological findings compatible with a recent CMV infection(AU)