Analysis of obstetric complications and uterine connective tissue in tenascin-X-deficient humans and mice

Tenascin-X (TNX) is a large, multi-domain, extracellular matrix glycoprotein. Complete deficiency of TNX in humans leads to a recessive form of Ehlers-Danlos syndrome (EDS), and TNX haploinsufficiency is a cause of hypermobility type EDS. EDS patients appear to have a higher risk of several complications during pregnancy, such as pelvic instability, premature rupture of membranes, and postpartum hemorrhage. Here, we present a study of genitourinary and obstetric complications in TNX-deficient women of reproductive age. We have found complications, such as uterus prolapses, that are in agreement with previous findings in other EDS types. In TNX knockout (KO) mice, we have observed mild pregnancy-related abnormalities. Morphological and immunohistological analysis of uterine tissues has not revealed obvious quantitative or spatial differences between TNX KO and wildtype mice with respect to collagen types I, III, V, and XII or elastic fibers. We conclude that TNX-deficient women are at risk of obstetric complications, but that TNX KO mice show only a mild phenotype. Furthermore, we show that TNX is involved in the stability of elastic fibers rather than in their initial deposition

Reconciling reintegration: the complexity of economic and social reintegration of ex-combatants in Burundi

Contains fulltext : 149370.pdf (publisher's version ) (Closed access)The extent to which disarmament, demobilisation and reintegration (DDR) programmes initiated by state or multilateral agencies can realise the reintegration of ex-combatants remains debated. While some consider that DDR should have the ambition to result in long-term reintegration, others argue that DDR should focus on short-term goals. This paper explores experiences with the reintegration of ex-combatants in Burundi. It shows the interconnectedness of economic and social reintegration processes, and demonstrates that the reintegration of ex-combatants cannot be seen in isolation from the wider recovery and development context in which DDR is taking place. Moreover, the case demonstrates that reconciliation and social reintegration are deeply interconnected, to the extent that social reintegration may fail if reconciliation is not taken into account. Rather than a debate between long- and short-term goals, the focus should therefore be on increasing the understanding of reintegration processes and finding ways in which programmes can contribute to those.23 p

What the New Deal can learn from the Human Security Approach : Scoping study on human security: a multi-level grounded approch towards the New Deal

This scoping study analyses the experiences with the implementation of the Human Security Approach in practice as elucidated in the literature, and aims at highlighting lessons that are of relevance to the successful design and implementation of the New Deal. The first chapter of this report investigates the development of two decades of human security. The second chapter investigates the development of the New Deal: a cornerstone for new ways of engagement in fragile and conflict-affected states. The third chapter analyses the New Deal as a continuation of the human security discourse, which allows drawing lessons and formulating recommendations

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

Background: Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research. Methods: We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues. Results: Sudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives. Conclusions: Sudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well