Metadata for Data dIscoverability aNd Study rEplicability in obseRVAtional Studies (MINERVA): Development and Pilot of a Metadata List and Catalogue in Europe.

Purpose: Metadata for data dIscoverability aNd study rEplicability in obseRVAtional studies (MINERVA), a European Medicines Agency-funded project (EUPAS39322), defined a set of metadata to describe real-world data sources (RWDSs) and piloted metadata collection in a prototype catalogue to assist investigators from data source discoverability through study conduct.

Methods: A list of metadata was created from a review of existing metadata catalogues and recommendations, structured interviews, a stakeholder survey, and a technical workshop. The prototype was designed to comply with the FAIR principles (findable, accessible, interoperable, reusable), using MOLGENIS software.

Specification of Self-Adaptive Privacy-Related Requirements within Cloud Computing Environments (CCE).

This paper presents a novel approach to address the challenges of self-adaptive privacy in cloud computing environments (CCE). Under the Cloud-InSPiRe project, the aim is to provide an interdisciplinary framework and a beta-version tool for self-adaptive privacy design, effectively focusing on the integration of technical measures with social needs. To address that, a pilot taxonomy that aligns technical, infrastructural, and social requirements is proposed after two supplementary surveys that have been conducted, focusing on users' privacy needs and developers' perspectives on self-adaptive privacy.

Juvenile Dermatomyositis: what comes next? Long-term outcomes in childhood myositis from a patient perspective.

Background: To describe long-term outcomes in JDM using patient questionnaires and link to longitudinal, prospectively collected data for each patient within the Juvenile Dermatomyositis Cohort and Biomarker Study, UK and Ireland (JDCBS) to determine outcome predictors.  METHODS: JDCBS participants aged ≥ 16y completed the SF36, HAQ and a questionnaire regarding current disease features, medications, education and employment. Data collected from the JDCBS included disease subtype, demographics, clinical and laboratory features.

Retrospective analysis of infliximab and adalimumab treatment in a large cohort of juvenile dermatomyositis patients.

Background: Anti-TNF treatment may be useful for the treatment of patients with refractory juvenile dermatomyositis (JDM). The aim of this study was to describe the use of infliximab and adalimumab therapy in juvenile dermatomyositis as an adjunctive treatment.

Methods: Sixty children recruited to the UK JDM Cohort and Biomarker Study that had received at least 3 months of anti-TNF treatment (infliximab or adalimumab) were studied.