Health within the Leeds Roma Community: Final Report

This report illustrates the findings from a piece of health-related research carried out within the Roma community in Leeds in 2012. The research aimed to explore Roma community member’s health status and associated health needs. Based upon data gathered from questionnaires and focus groups with Roma community members and interview data from health professionals working with them, this report presents evidence from the data gathered. The findings reported here relate to the migrant population of Roma resident within the UK, not the indigenous Gypsy and Traveller population of the UK. UK and Irish Travellers, despite sharing common experiences to the Roma in terms of discrimination and exclusion, are a distinct community and are not of Roma origin and thus are not the focus of this report

Health within the Leeds Migrant Roma Community; An Exploration of Health Status and Needs within One UK Area

Existing evidence shows that many Roma communities have received little attention in relation to their health requirements. Evidence illustrates how Roma communities suffer from poorer health and unhealthier living conditions when compared to majority populations, with their poor health closely linked to wider social determinants. This study explored the health status and associated health needs of the Leeds Roma migrant community, a hard to reach and under-explored group across Europe. Questionnaires (n = 70) and focus groups (n = 43) with Roma community members as well as interviews with health professionals (n = 5) working with them were used. The study found language was a key barrier to accessing health care and understanding health messages. Furthermore, participant’s understandings of the health system were hindered by their different experiences within their countries of origin. Self-reports illustrated low mental well-being, high levels of stress and unhealthy lifestyles as common issues. The research also highlighted several wider determinants of health as key concerns within the Roma community including housing, employment opportunities and money. The findings of this study contribute to increasing understandings of this community’s health needs, their support requirements and the barriers faced by them. These need to be considered to inform strategies and ways of working as mechanisms to tackle health inequalities and promote health within this community

Development of the autoinflammatory disease damage index (ADDI)

OBJECTIVES: Autoinflammatory diseases cause systemic inflammation that can result in damage to multiple organs. A validated instrument is essential to quantify damage in individual patients and to compare disease outcomes in clinical studies. Currently, there is no such tool. Our objective was to develop a common autoinflammatory disease damage index (ADDI) for familial Mediterranean fever, cryopyrin-associated periodic syndromes, tumour necrosis factor receptor-associated periodic fever syndrome and mevalonate kinase deficiency. METHODS: We developed the ADDI by consensus building. The top 40 enrollers of patients in the Eurofever Registry and 9 experts from the Americas participated in multiple rounds of online surveys to select items and definitions. Further, 22 (parents of) patients rated damage items and suggested new items. A consensus meeting was held to refine the items and definitions, which were then formally weighted in a scoring system derived using decision-making software, known as 1000minds. RESULTS: More than 80% of the experts and patients completed the online surveys. The preliminary ADDI contains 18 items, categorised in the following eight organ systems: reproductive, renal/amyloidosis, developmental, serosal, neurological, ears, ocular and musculoskeletal damage. The categories renal/amyloidosis and neurological damage were assigned the highest number of points, serosal damage the lowest number of points. The involvement of (parents of) patients resulted in the inclusion of, for example, chronic musculoskeletal pain. CONCLUSIONS: An instrument to measure damage caused by autoinflammatory diseases is developed based on consensus building. Patients fulfilled a significant role in this process

Educational initiatives and training for paediatric rheumatology in Europe

The Paediatric Rheumatology European Society (PReS) has over many years, developed a portfolio of educational activities to address increasing educational needs of workforce and support young clinicians to acquire skills to develop new knowledge and deliver clinical care in the future. These educational activities aim to facilitate growth of paediatric rheumatology and ultimately improve the clinical care for children and families. This article describes the current portfolio of PReS educational activities and their relevance to the international paediatric rheumatology community

In Vitro and In Vivo Antagonism of a G Protein-Coupled Receptor (S1P3) with a Novel Blocking Monoclonal Antibody

Background: S1P 3 is a lipid-activated G protein-couple receptor (GPCR) that has been implicated in the pathological processes of a number of diseases, including sepsis and cancer. Currently, there are no available high-affinity, subtypeselective drug compounds that can block activation of S1P3. We have developed a monoclonal antibody (7H9) that specifically recognizes S1P3 and acts as a functional antagonist. Methodology/Principal Findings: Specific binding of 7H9 was demonstrated by immunocytochemistry using cells that over-express individual members of the S1P receptor family. We show, in vitro, that 7H9 can inhibit the activation of S1P3mediated cellular processes, including arrestin translocation, receptor internalization, adenylate cyclase inhibiton, and calcium mobilization. We also demonstrate that 7H9 blocks activation of S1P3 in vivo, 1) by preventing lethality due to systemic inflammation, and 2) by altering the progression of breast tumor xenografts. Conclusions/Significance: We have developed the first-reported monoclonal antibody that selectively recognizes a lipidactivated GPCR and blocks functional activity. In addition to serving as a lead drug compound for the treatment of sepsi

Web users with autism: eye tracking evidence for differences

Anecdotal evidence suggests that people with autism may have different processing strategies when accessing the web. However, limited empirical evidence is available to support this. This paper presents an eye tracking study with 18 participants with high-functioning autism and 18 neurotypical participants to investigate the similarities and differences between these two groups in terms of how they search for information within web pages. According to our analysis, people with autism are likely to be less successful in completing their searching tasks. They also have a tendency to look at more elements on web pages and make more transitions between the elements in comparison to neurotypical people. In addition, they tend to make shorter but more frequent fixations on elements which are not directly related to a given search task. Therefore, this paper presents the first empirical study to investigate how people with autism differ from neurotypical people when they search for information within web pages based on an in-depth statistical analysis of their gaze patterns