The response is like a big ship': community feedback as a case study of evidence uptake and use in the 2018-2020 Ebola epidemic in the Democratic Republic of the Congo.

INTRODUCTION: The 2018-2020 Ebola outbreak in the Democratic Republic of the Congo (DRC) took place in the highly complex protracted crisis regions of North Kivu and Ituri. The Red Cross developed a community feedback (CF) data collection process through the work of hundreds of Red Cross personnel, who gathered unprompted feedback in order to inform the response coordination mechanism and decision-making. AIM: To understand how a new CF system was used to make operational and strategic decisions by Ebola response leadership. METHODS: Qualitative data collection in November 2019 in Goma and Beni (DRC), including document review, observation of meetings and CF activities, key informant interviews and focus group discussions. FINDINGS: The credibility and use of different evidence types was affected by the experiential and academic backgrounds of the consumers of that evidence. Ebola response decision-makers were often medics or epidemiologists who tended to view quantitative evidence as having more rigour than qualitative evidence. The process of taking in and using evidence in the Ebola response was affected by decision-makers' bandwidth to parse large volumes of data coming from a range of different sources. The operationalisation of those data into decisions was hampered by the size of the response and an associated reduction in agility to new evidence. CONCLUSION: CF data collection has both instrumental and intrinsic value for outbreak response and should be normalised as a critical data stream; however, a failure to act on those data can further frustrate communities

Orbital/ocular inflammatory involvement in VEXAS syndrome: Data from the international AIDA network VEXAS registry

VEXAS syndrome is a recently described monogenic autoinflammatory disease capable of manifesting itself with a wide array of organs and tissues involvement. Orbital/ocular inflammatory manifestations are frequently described in VEXAS patients. The objective of this study is to further describe orbital/ocular conditions in VEXAS syndrome while investigating potential associations with other disease manifestations. In the present study, twenty-seven out of 59 (45.8 %) VEXAS patients showed an inflammatory orbital/ocular involvement during their clinical history. The most frequent orbital/ocular affections were represented by periorbital edema in 8 (13.6 %) cases, episcleritis in 5 (8.5 %) patients, scleritis in 5 (8.5 %) cases, uveitis in 4 (6.8 %) cases, conjunctivitis in 4 (6.8 %) cases, blepharitis in 3 (5.1 %) cases, orbital myositis in 2 (3.4 %) cases. A diagnosis of systemic immune-mediated disease was observed in 15 (55.6 %) cases, with relapsing polychondritis diagnosed in 12 patients. A significant association was observed between relapsing polychondritis and orbital/ocular involvement in VEXAS syndrome (Relative Risk: 2.37, 95 % C.I. 1.03-5.46, p = 0.048). Six deaths were observed in the whole cohort of patients after a median disease duration of 1.2 (IQR=5.35) years, 5 (83.3 %) of which showed orbital/ocular inflammatory involvement. In conclusion, this study confirms that orbital/ocular inflammatory involvement is a common finding in VEXAS patients, especially when relapsing polychondritis is diagnosed. This makes ophthalmologists a key figure in the diagnostic process of VEXAS syndrome. The high frequency of deaths observed in this study seems to suggest that patients with orbital/ocular involvement may require increased attention and more careful follow-up