The AutoInflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

Objective: The present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network. Methods: This is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner stones of the platform. Results: AIDA project will share knowledge and expertise on mAIDs. Since its start, 118 centers from 24 countries and 4 continents have joined the AIDA project. Fifty-nine centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 337 users (122 Principal Investigators, 210 Site Investigators, 2 Lead Investigators, and 3 data managers). The Registry collects baseline and follow-up data using 3,748 fields organized into 21 instruments, which include demographics, patient history, symptoms, trigger/risk factors, therapies, and healthcare information for mAIDs patients. Conclusions: The AIDA mAIDs Registry, acts both as a research tool for future collaborative real-life studies on mAIDs and as a service to connect all the figures called to participate. On this basis, the registry is expected to play a pivotal role in generating new scientific evidence on this group of rare diseases, substantially improving the management of patients, and optimizing the impact on the healthcare system. NCT 05200715 available at https://clinicaltrials.go

Production of K-S(,)0 K-*+/- (892) and phi(0) (1020) in minimum bias events and K-S(0) and Lambda(0) in jets in p (p)over-barcollisions at root S 1: 96 TeV

We report measurements of the inclusive transverse momentum (pT) distribution of centrally produced KS0, K±(892), and φ0(1020) mesons up to pT=10 GeV/c in minimum bias events, and KS0 and Λ0 particles up to pT=20 GeV/c in jets with transverse energy between 25 and 160 GeV in pp̄ collisions. The data were taken with the CDF II detector at the Fermilab Tevatron at √s=1.96 TeV. We find that as pT increases, the pT slopes of the three mesons (KS0, K±, and φ) are similar. And using our previous Λ0 results from minimum bias events, we show that the ratio of Λ0 to KS0 as a function of pT in minimum bias events becomes similar to the fairly constant ratio in jets at pT∼5 GeV/c. This suggests that the particles with pTâ‰35 GeV/c in minimum bias events are from "soft" jets, and that the pT slope of particles in jets is insensitive to light quark flavor (u, d, or s) and to the number of valence quarks. We also find that for pT≠24 GeV relatively more Λ0 baryons are produced in minimum bias events than in jets. © 2013 American Physical Society