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Remote patient-reported outcome measure (PROM) data capture can provide useful insights into research and clinical practice and deeper insights can be gained by administering assessments more frequently, for example, in ecological momentary assessment. However, frequent data collection can be limited by the burden of multiple, lengthy questionnaires. This burden can be reduced with computerized adaptive testing (CAT) algorithms that select only the most relevant items from a PROM for an individual respondent. In this paper, we propose \"ecological momentary computerized adaptive testing\" (EMCAT): the use of CAT algorithms to reduce PROM response burden and facilitate high-frequency data capture via a smartphone app. We develop and pilot a smartphone app for performing EMCAT using a popular hand surgery PROM. The aim of this study is to determine the feasibility of EMCAT as a system for remote PROM administration. We built the EMCAT web app using Concerto, an open-source CAT platform maintained by the Psychometrics Centre, University of Cambridge, and hosted it on an Amazon Web Service cloud server. The platform is compatible with any questionnaire that has been parameterized with item response theory or Rasch measurement theory. For this study, the PROM we chose was the patient evaluation measure, which is commonly used in hand surgery. CAT algorithms were built using item response theory models derived from UK Hand Registry data. In the pilot study, we enrolled 40 patients with hand trauma or thumb-base arthritis, across 2 sites, between July 13, 2022, and September 14, 2022. We monitored their symptoms with the patient evaluation measure, via EMCAT, over a 12-week period. Patients were assessed thrice weekly, once daily, or thrice daily. We additionally administered full-length PROM assessments at 0, 6, and 12 weeks, and the User Engagement Scale at 12 weeks. The use of EMCAT significantly reduced the length of the PROM (median 2 vs 11 items) and the time taken to complete it (median 8.8 seconds vs 1 minute 14 seconds). Very similar scores were obtained when EMCAT was administered concurrently with the full-length PROM, with a mean error of <0.01 on a logit (z score) scale. The median response rate in the daily assessment group was 93%. The median perceived usability score of the User Engagement Scale was 4.0 (maximum possible score 5.0). EMCAT reduces the burden of PROM assessments, enabling acceptable high-frequency, remote PROM data capture. This has potential applications in both research and clinical practice. In research, EMCAT could be used to study temporal variations in symptom severity, for example, recovery trajectories after surgery. In clinical practice, EMCAT could be used to monitor patients remotely, prompting early intervention if a patient's symptom trajectory causes clinical concern. ISRCTN 19841416; https://www.isrctn.com/ISRCTN19841416.

This article presents the historical roots of Roma women’s activism, using the example of two countries in different historical periods. The first part is devoted to a discussion on empowering Roma women in the early USSR. It happened in the frames of the general discourse of Soviet national policy in this period and aimed at the complete elimination of the disadvantaged position of women in various spheres (social, economic, political, cultural, educational, etc.). The second part presents the case of socialist Bulgaria, where we have an example of a process of women’s empowerment at the grassroots level. There, we outline the role of the Fatherland Front’s schools for women activists of minority background. In conclusion, we discuss which of the two presented patterns of the development of Roma women’s activism – from top to bottom (as in the USSR in the 1920s and 1930s) or from bottom to top (as in Bulgaria in the 1960s and the 1970s) – proved to be more efficient and gave better results in terms of the socialist women’s emancipation processes and the current position of Roma women in society and their community. This article was published open access under a CC BY licence: https://creativecommons.org/licences/by/4.0.

The article analyzes contemporary political discourses with regard to social inclusion of Roma on the basis of comparison with achievements and failures in the previous historical period of the communist rule in Eastern Europe. It argues that since the vast majority of the European Roma had lived in the past and continue living nowadays in the countries of Eastern Europe, no successful policy for their inclusion is possible without taking into account the experiences and outcomes of the actions for Roma integration in the socialist period. The experience from the times of socialism shows that successful policies are possible only in an appropriate socio-political context and only if accomplished within the mainstream approach. Against this background, the article scrutinizes the European Policies for Social Inclusion of Roma, and explains why they present a Catch 22 situation: There is a vicious cycle of problems which need to be solved; the solution requires a special policy for inclusion, however this policy stigmatizes Roma and sets them even more apart from the rest of society. Thus the vicious cycle of problems expands. The main point of the article is to propose an explanation of this failure of democracy and liberalism, which could constitute a useful lesson for the future.

From the beginning, academic research on Gypsies in Western Europe has presented their nomadic way of life as their most important and essential feature, a key pillar of their community identity. Measures for their sedentarisation were perceived as a shackle in a chain of persecutions, and the policy of sedentarisation conducted in the 1950s–1970s in Central, South-Eastern, and Eastern Europe has continuously been interpreted as an example of the crimes of the communist regimes against the human and cultural rights of Roma. What has been missing, however, in these interpretations is the stance on the issue of nomadism as expressed by the Roma themselves and, more specifically, by the Roma civic elite: namely, by the Roma activists who initiated the Roma civic emancipation and created the first Roma organizations in the regions. In recent years, a need to critically re-think the field of Romani Studies in order to take into account the viewpoint of the studied community comes in the foreground of academic and civil society discussions. Such re-consideration is unavoidable also in studying the field of Roma history. This article strives to fill this knowledge gap and to initiate a new discussion about the issue of the so-called Gypsy nomadism. The viewpoints on this issue, coming from the Roma civic elite itself, are presented primarily on the basis of historical evidence from the interwar period, but are not limited to its framework. Finally, later historical developments in the issue of Roma activists’ approach to Gypsy nomadism will also be outlined, including its contemporary dimensions.

The editorial introduces the key ideas of this thematic issue, which originated within the European Research Council project ‘RomaInterbellum. Roma Civic Emancipation between the Two World Wars.’ The period between WWI and WWII in the region of Central, Southeastern and Eastern Europe was an era of worldwide significant changes, which marked the birth of the Roma civic emancipation movement and impacted Roma communities’ living strategies and visions about their future, worldwide. The aspiration of this thematic issue is to present the main dimensions of the processes of Roma civic emancipation and to outline the role of the Roma as active participants in the historical processes occurring in the studied region and as the creators of their own history. The editorial offers clarifications on the terminology and methodology employed in the articles included in this issue and their spatial and chronological parameters while also briefly introducing the individual authored studies of this issue.

The Roma, also known as 'Gypsies', represent the largest and the most widespread ethnic minority of Europe. There is increasing evidence, based on linguistic, anthropological and genetic data, to suggest that they originated from the Indian subcontinent, with subsequent bottlenecks and undetermined gene flow from/to hosting populations during their diaspora. Further support comes from the presence of Indian uniparentally inherited lineages, such as mitochondrial DNA M and Y-chromosome H haplogroups, in a significant number of Roma individuals. However, the limited resolution of most genetic studies so far, together with the restriction of the samples used, have prevented the detection of other non-Indian founder lineages that might have been present in the proto-Roma population. We performed a high-resolution study of the uniparental genomes of 753 Roma and 984 non-Roma hosting European individuals. Roma groups show lower genetic diversity and high heterogeneity compared with non-Roma samples as a result of lower effective population size and extensive drift, consistent with a series of bottlenecks during their diaspora. We found a set of founder lineages, present in the Roma and virtually absent in the non-Roma, for the maternal (H7, J1b3, J1c1, M18, M35b, M5a1, U3, and X2d) and paternal (I-P259, J-M92, and J-M67) genomes. This lineage classification allows us to identify extensive gene flow from non-Roma to Roma groups, whereas the opposite pattern, although not negligible, is substantially lower (up to 6.3%). Finally, the exact haplotype matching analysis of both uniparental lineages consistently points to a Northwestern origin of the proto-Roma population within the Indian subcontinent.

This article presents the history of the politics of multilingualism (or lack thereof) in regard to Roma (formerly known as ‘Gypsies’). In the 1920s and 1930s in the newly established Union of Soviet Socialist Republics, against a backdrop of proclaimed principles of full equality of all peoples living in the new state, commenced a rapid creation of schools for Roma children with instruction in Romani mother-tongue along with special training of Roma teachers. The results achieved were impressive in regard to the general literacy of Roma communities, but nevertheless in 1938 the ‘Gypsy schools’ have been closed and Roma children were enrolled into mainstream schools lacking any elements of multilingualism. After World War II individual countries of Eastern Europe implemented various forms of special education for Roma children, neither of which however with elements of multilingualism. Only after the collapse of communist regimes in Eastern Europe, in the conditions of transition and the subsequent Euro-integration, various singular countries in the region have developed individual elements of multilingualism and educational policies targeting Roma children (e.g., introducing under various forms a Romani language instruction). Sporadically there even appeared proposals for teaching instruction conducted entirely in Roma mother-tongue, which were debated and rejected (including by Roma themselves).

This article traces the beginning of Romani literature. It focuses on the work of Alexander Germano in the context of the history of a unique Romani literacy project developed in the USSR before the Second World War. It shows the peculiarity of the Soviet Romani literature and in particular the personal activities and contributions of Germano, the man considered the progenitor of contemporary Romani literature (with works in all three main genres of literature: poetry, prose, and drama). The study is based on a number of years of archival work in a variety of archives in the Russian Federation and to a great extent in Alexander Germano’s personal archive, preserved in the town of Orel (Russian Federation). The documents studied allow us to clarify the blurred spots in his biography, to reveal his ethnic background and identity, and to highlight the reason for the success of the Romani literary project. The example of Germano shows that the beginning of a national literature depends on the significance and public impact of the literary work of a particular author, and is not necessarily related to the author’s ethnic origin and identity.

For centuries in different countries of Central, South-eastern and Eastern Europe groups of people have lived who are all called by their surrounding population with different appellations, which is usually translated into English as “Gypsies”. In the last quarter of a century, instead of these names, a new common designation has been established in the region’s public discourse, based on their self-appellation “Roma”. The processes of labelling and imposition of the new name on these communities did not stop in this region, and the label “Roma” is increasingly spreading in the remaining parts of Europe and even beyond. This process of imposing “from above” of a “politically correct” labelling, however, has led to, for some perhaps unexpectedly, to others predictably, an impact on the field. Some local communities labelled today “Roma” started to demonstrate publicly their reluctance to comply with the designation imposed on them from the “outside”. The proposed article will reveal the historical sources of labelling of these communities and main dimensions of these contradictory processes. More generally the article will pose the question on the necessity for change in the relationship between academia on the one hand and the political ideology on the other. In other words, the question is about the main task and responsibility of academia – is it about examining the reality and bringing new knowledge, or presenting the reality according pre-defined norms?

Two types of ethnonym - endonyms (used within a community itself) and exonyms (used by other Gypsy groups and the macro-society) - correlate in complex ways. We concentrate on cases characteristic of the Balkans and the Gypsy groups who migrated from there in the nineteenth and twentieth centuries. Among these groups, ethnonyms are formed on the basis of the economic activities characteristic for a given Gypsy group (so-called professionyms), for instance Kalajdži, Demirdži, Kelderari, and Košničari/Sepetči. We analyse the different ways in which endonyms and exonyms function. In doing so we show the emergence and decline of specific group appellations and how particular Gypsy groups are distinguished from others through the clear expression of group ethnonyms.