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"Vincent, Nicholas"
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Consensus recommendations on holistic care in hereditary ATTR amyloidosis: an international Delphi survey of patient advocates and multidisciplinary healthcare professionals
BackgroundHereditary transthyretin-mediated amyloidosis is a rare, progressive and potentially life-limiting multisystem disease, affecting every aspect of a patient’s life.ObjectivesThis online international Delphi survey aimed to evolve clinical−patient-led practical guidance, to inspire and encourage a holistic approach to care that is managed in specialist settings by multidisciplinary teams and supported by allied healthcare professionals (HCPs) and patient advocacy groups (PAGs).DesignA 14-member joint patient advocate−HCP primary panel was convened including representation from PAGs and key clinical specialties (neurology, cardiology, internal medicine, physiotherapy, clinical psychology, dietetics and specialist nursing). Guidance evolved on the care provision needed to support seven core goals: early diagnosis and treatment; disease monitoring and organisation of care; maintenance of physical and mental health; family-centred care and caregiver support; patient−doctor dialogue; access to social support and social networking.ParticipantsFrom June to October 2022, 252 HCPs and 51 PAG representatives from 27 countries were invited to participate in a Delphi survey. Of the 122 respondents who answered at least one survey question, most were HCPs (100, 82%) from specialist centres; the remainder were PAG representatives (22, 18%).Main outcome measureBoth level of agreement and feasibility in practice of each recommendation was tested by two anonymised online Delphi voting rounds.ResultsBased on an a priori threshold for consensus of ≥75% agreement, the clinical–patient community endorsed all but one recommendation. However, only 17/49 (35%) recommendations were identified by most HCPs as a core part of routine care; the remainder (32/49 (65%)) were identified as part of core care by <50% of HCPs respondents, or as largely achievable by 30%–45% of HCPs. By comparison, PAGs recorded lower implementation levels.ConclusionsFurther consideration is needed on how to evolve multidisciplinary services (supported by allied HCPs and PAGs) to address the complex needs of those affected by this disease.
Journal Article
A step forward in tracing and documenting dataset provenance
Training data are crucial for advancements in artificial intelligence, but many questions remain regarding the provenance of training datasets, license enforcement and creator consent. Mahari et al. provide a set of tools for tracing, documenting and sharing AI training data and highlight the importance for developers to engage with metadata of datasets.
Journal Article
Ribonucleoproteins in Archaeal Pre-rRNA Processing and Modification
Given that ribosomes are one of the most important cellular macromolecular machines, it is not surprising that there is intensive research in ribosome biogenesis. Ribosome biogenesis is a complex process. The maturation of ribosomal RNAs (rRNAs) requires not only the precise cleaving and folding of the pre-rRNA but also extensive nucleotide modifications. At the heart of the processing and modifications of pre-rRNAs in Archaea and Eukarya are ribonucleoprotein (RNP) machines. They are called small RNPs (sRNPs), in Archaea, and small nucleolar RNPs (snoRNPs), in Eukarya. Studies on ribosome biogenesis originally focused on eukaryotic systems. However, recent studies on archaeal sRNPs have provided important insights into the functions of these RNPs. This paper will introduce archaeal rRNA gene organization and pre-rRNA processing, with a particular focus on the discovery of the archaeal sRNP components, their functions in nucleotide modification, and their structures.
Journal Article
Gregory IX and the Search for an Anglo-French Peace, 1227–1241
AbstractFor popes of the High Middle Ages, peace-making was considered an essential function of their office. Peace, a central part of the Christian message, was particularly necessary within Christendom for the success of the Crusades. The papacy was deeply involved over a long period in attempts to bring about peace between France and England. This study, exploring Gregory IX's attempts to secure peace between Henry III of England (1216–1272) and Louis IX of France (1226–1270), demonstrates the manner in which the process of peace could be manipulated by the parties involved and contributes to the debate concerning whether the papacy was proactive or responsive in its government.Keywords: Peace, Truce, France, England, PapacyGone are the days when the biographers of medieval popes, even of such exalted figures as Gregory VII or Innocent III, could write of them as ‘Leaders of Europe’, let alone as men who ‘shook the World’. It is increasingly acknowledged that a large part of the business of even the most autocratic of medieval popes was transacted in answer to petitions submitted to the Curia by those seeking favours. Save when specific circumstances persuaded particular popes to reshape policy, papal government was responsive rather than dynamic. In the case of Gregory IX, this would allow us to view the high politics of Church and state, especially the relations between Pope Gregory and the Emperor Frederick II, as subject to direct papal control, but much of the rest of papal policy as responsive routine.Where, between these two extremes, active or passive, are we to place the pope's commitment to the establishment of peace as a prerequisite for the salvation of souls? Peace-making was one of the functions of the papacy, from at least the time of Leo I, and his supposed defence of Rome against Attila. However, whilst historians have paid lip-service to papal peace-making activities, very little has been written on the effects of papal diplomacy within any particular peace initiative. A notable exception is Michele Maccarrone's study of Innocent III's dealings with England and France, focused upon the decretal Novit ille and the pope's claims to jurisdiction over breaches of the peace as a matter of sin rather than of feudal jurisdiction.
Book Chapter
