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This working paper presents three perspectives on the ways in which a labeling of social actors, processes, or conflicts as 'religion' or 'religious' plays a central role in disputes about migration and identity-formation in contemporary Europe. From the perspective of world society theory, the examples discussed here could be in­terpreted in regard to the concept of 'responsivity', i.e. responses inside a particu­lar function system like religion to expectations and developments in other socie­tal functions systems. Labeling processes strongly affect the ways in which migrant religions are incorpo­rated in a new context. Rafaela Eulberg's section of the working paper shows the impact of such processes of ascription in the context of refugee immigration, in particular the incorporation of Sri Lankan Tamil Hindus in Switzerland. A charac­teristic of the first years of Tamil Hindu migration to Switzerland was a dynamic interplay between the South Asian Hindus and Swiss Hindu converts. In the early 1980s, the temple of the "International Society for Krishna Consciousness" (ISK­CON) in Zurich became a particularly important contact zone, in which contrary labeling processes influenced the encounter of Krishna devotees and Tamil mi­grants. A second example shows how labeling processes act as invisible builders of sacred architecture. The recent overall image of immigrant groups had an influ­ence on differing tower politics within Swiss political discourses. There were strik­ing differences between the perception of the existing four minarets in Switzerland and the newly erected Hindu temple tower in Trimbach. Annika Jacobsen's section addresses the situation of Arabic refugees in Germany with regard to their ascribed and self-reported religious identities on the basis of empirical data accumulated in Hamburg. 'Religion' plays a prominent role in the public discourse about the settlement of refugees in Germany, especially when concerned with a group among them that is largely identified as 'Arabic' due to their outward appearance. Jacobsen highlights the ascription of religious labels and the conditions for their switching with other labels to point to the possible in­fluence these dynamics may have on the integration of refugees. Her qualitative interviews demonstrate the diversity of refugees' self-identified religious belong­ing (some of them being Muslim, some self-proclaimed "believers" and some athe­ists) and the generally moderate role religion plays in their everyday lives. What most of them had in common, however, were experiences with members of the host-society in which they were ascribed a Muslim identity that was often linked to a dogmatic or fundamentalist image of Islam. All of the interview partners felt equally frustrated and stigmatized by these ascriptions. Jacobsen explores how these dynamics influence refugees' stances towards religion and the host-society by making reference to the history of the discourse about Turkish "guest workers" in Germany. Another dispute about the labeling of religion can be observed in the establishment of refugee accommodations in Hamburg as 'neutral spaces' in which the categories of 'religion' and 'culture' are employed by the camp staff to either dismiss or justify certain practices and symbols within camp life. Petra Tillessen explores the role of labeling something as 'religion' or 'religious' in mediation, a booming field in dealing with interpersonal conflicts. But how can 'religious dimensions' in such conflicts be dealt with and what can the academic study of religion/s contribute to mediation? In the existing mediation literature, "religion" is frequently presented as a unique phenomenon, a very special and difficult thing to deal with. It is mostly seen as a stable and closed entity – at least as far as individuals are concerned. As religious convictions are seen as hardly negotiable, it is often recommended to deal with them e.g. by translating "religious" questions into other "social languages". It is therefore precisely in the preparation of mediators for 'religious dimensions' of conflicts, that demarcations or differenc­es could be inadvertently strengthened. A combination of the expertise of the ac­ademic study of religion with the expertise of mediation training programs could possibly allow the development of new practical assignments for a religion-sensi­tive mediation. Recent approaches in the study of religion/s focus on the diversity, plurality, and flexibility of religions. Drawing on these approaches might allow us to develop an understanding of 'flexible facts' about religion/s as an orientation for mediation processes. This could also serve as the theoretical backdrop for the de­velopment of new practical assignments. Tillessen presents three examples of this work in progress: "My Groups", "Labels", and the Simulation game "You As a Muslim…".

Rett syndrome (RTT) is a rare neurological disorder mostly caused by a genetic variation in MECP2. Making new MECP2 variants and the related phenotypes available provides data for better understanding of disease mechanisms and faster identification of variants for diagnosis. This is, however, currently hampered by the lack of interoperability between genotype-phenotype databases. Here, we demonstrate on the example of MECP2 in RTT that by making the genotype-phenotype data more Findable, Accessible, Interoperable, and Reusable (FAIR), we can facilitate prioritization and analysis of variants. In total, 10,968 MECP2 variants were successfully integrated. Among these variants 863 unique confirmed RTT causing and 209 unique confirmed benign variants were found. This dataset was used for comparison of pathogenicity predicting tools, protein consequences, and identification of ambiguous variants. Prediction tools generally recognised the RTT causing and benign variants, however, there was a broad range of overlap Nineteen variants were identified that were annotated as both disease-causing and benign, suggesting that there are additional factors in these cases contributing to disease development. ; The authors would like to thank the Mutalyzer team for support and feedback, Henk van Kranen for support in liftover of ancient genetic variant descriptions, and Eric Smeets for collection of the Maastricht Rett dataset.This work was funded by ELIXIR (funded by the European Commission within the Research Infrastructures programme of Horizon 2020), the research infrastructure for life-science data (MolData2). FE and LC were also funded by The Dutch Rett Syndrome Foundation (Stichting Terre). CE, AJ, RK, AV, SCG, MB, MRi and MR also received funding from EXCELERATE (H2020, Grant No. 676559). AJ, RK, MR, MB, and SCG also received funding from RD-Connect, European Union Seventh Framework Programme (FP7/2007–2013, Grant No. 305444). FE, CE, AJ, RK, MR, MB, and SCG received funding from the European Union's Horizon 2020 Research and Innovation Program under grant agreement EJP RD N°825575. RK was also funded by NWO in project VWData (grant no. 400.17.605) and BBMRI-NL (NWO, National Roadmap for Large-Scale Research Facilities, grant no. 184.033.111). AV and SCG also received funding from INB Grant (Grant No. PT17/0009/0001 - ISCIII-SGEFI / ERDF). ; Peer Reviewed ; Postprint (published version)

Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality. ; Supported by the RD-CONNECT: an integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research, which received funding from the European Union within the framework of FP7 Collaborative projectHEALTH.2012.2.1.1-1-C [Grant agreement number: 305444]. Supported partly also by EuRRECa: European Registries for Rare Endocrine Conditions, which received funding from the European Union within the framework of CHAFEA Health Programme (2014–2020) [Grant agreement number: 777215] and the COST Action CA16210 "Maximising Impact of research in NeuroDevelopmental Disorders". ; Sí