Pablo Pineau, Marcelo Marino, Nicolas Arata, Belén Mercado

Pablo Pineau, Marcelo Marino, Nicolas Arata, Belén Mercado. El principio del fin. Políticas y memorias de la educación en la ultima dictadura militar. (1976-1883

Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases

BackgroundIn 2017, the German Academy for Rare Neurological Diseases (Deutsche Akademie fur Seltene Neurologische Erkrankungen;DASNE) was founded to pave the way for an optimized personalized management of patients with rare neurological diseases (RND) in all age groups. Since then a dynamic national network for rare neurological disorders has been established comprising renowned experts in neurology, pediatric neurology, (neuro-) genetics and neuroradiology. DASNE has successfully implemented case presentations and multidisciplinary discussions both at yearly symposia and monthly virtual case conferences, as well as further educational activities covering a broad spectrum of interdisciplinary expertise associated with RND. Here, we present recommendation statements for optimized personalized management of patients with RND, which have been developed and reviewed in a structured Delphi process by a group of experts.MethodsAn interdisciplinary group of 37 RND experts comprising DASNE experts, patient representatives, as well as healthcare professionals and managers was involved in the Delphi process. First, an online collection was performed of topics considered relevant for optimal patient care by the expert group. Second, a two-step Delphi process was carried out to rank the importance of the selected topics. Small interdisciplinary working groups then drafted recommendations. In two consensus meetings and one online review round these recommendations were finally consented.Results38 statements were consented and grouped into 11 topics: health care structure, core neurological expertise and core mission, interdisciplinary team composition, diagnostics, continuous care and therapy development, case conferences, exchange / cooperation between Centers for Rare Diseases and other healthcare partners, patient advocacy group, databases, translation and health policy.ConclusionsThis German interdisciplinary Delphi expert panel developed consented recommendations for optimal care of patients with RND in a structured Delphi process. These represent a basis for further developments and adjustments in the health care system to improve care for patients with RND and their families

Bunch Length Measurements Using Transverse Deflecting Systems

Shorter and shorter bunch lengths (some 10 fs) require sophisticated bunch length measurement devices. Free electron lasers - but not only - use transverse deflecting systems. Employing suitable diagnostic tools measurements are not limited to bunch lengths but can be extended to longitudinal profiles and phase -space distributions, and slice emittances. Not only do successfully operated systems aid the commissioning and operation of FELs but they allow control over more sophisticated phase-space manipulations. The design and construction of such systems , actually operated at different RF frequencies, includes cavity design and fabrication, powerful RF sytems, low level RF control, beam lines, diagnostics, and data analysi

Measurement of the Beam Energy Spread in the TTF Photo-Injector

At the TESLA Test Facility (TTF) linac the required high peak current for FEL operation is achieved by compressing the beam longitudinally in a magnetic chicane. The peak current after the chicane is determined by the residual energy spread of the electron bunch which is produced by anrf photo-injector. By residual energy spread we refer to the energy spread of a temporal slice of the bunch which can not be compensated by any time dependent energy modulation. To determine the energy distribution, an improved optical system has been implemented to image the beam atan OTR-station after a spectrometer dipole. In this paper the results of the beam profile measurements are presented and compared to particle tracking simulations. It is shown that the residual energy spread in the injector on in order of a few keV only, even at bunch charges of 4 nC

System Identification for the Digital RF Control System at the TESLA Test Facility

The rf control system for the TESLA Test Facility employs a digital feedback system to provide flexibility in the choice of feedback algorithms and extensive diagnostics for rf system operation and exception handling. The control algorithm makes use of the state space formalism where the state describes the real and imaginary part of the cavity voltage (vector of the accelerating field) and the cavity detuning. The cavity detuning - which is time dependent due to the dynamics of lorentz-force-detuning in a pulsed cavity - can not be measured directly. Knowledge about the time-varying cavity detuning and other rf system parameters such as beam phase are derived by application of system identification to the uncalibrated measured cavity field and incident and reflected wave. In this process the calibrations for incident and reflected wave are determined which includes compensation for the finite directivity of the directional couplers

Engineering Collaboration Experience at the European XFEL

The construction of the European XFEL involved a huge internationally distributed and inter-disciplinary engineering effort. This paper discusses examples for good engineering practices which have been successfully developed and applied in the construction of the European XFEL. It addresses appropriate combination of de-/central activities in design collaboration and integration; the use of manufacturing bills of materials for coordinating and tracking contributions, as well as for clarifying responsibilities; the right amount of reviews for keeping activities in synch; some specific needs of and measures for in-kind collaboration; and general methods, tools and practices and spirit for efficient communication and collaboration

Requirements for the RF Control of the Vector Sum for Superconducting Proton Linacs

Superconducting accelerator technology has demonstrated its superior performance in large scale machines such as CEB A at TJNAF and is increasingly used for new accelerator designs. Until now tins technology has found its main application in electron accelerators. However nowadays proton accelerator designs for the European Spallation Source (ESS) and the Accelerator Driven Transmutation Technology (ADTT) also study the feasibility of superconducting linacs. In contrast to the highly relativistic electron beams the proton beam exhibits an increased susceptibility to voltage fluctuations in die acceleration system induced by microphonics and dynamic Lorentz force detuning. Aldiough low beam loss is an important criterion for linac design, studies of die longitudinal dynamics appear to be a good indicator for beam stability in presence of fluctuations of die accelerating field. Control of die vector sum of multiple cavities driven by one klystron is desirable for cost reasons but does not allow for control of individual cavity fields. In diis paper we study die performance of such a system

Progress in the Injector Upgrade of the LINAC II at DESY

A new injection system is under development for the LINAC II at DESY to improve the reliability of the machine and mitigate the radiological problem due to electron losses at energy of hundreds of MeV. It consists of a 100 kV triode DC gun, a 2.998 GHz pre-buncher, a novel 2.998 GHz hybrid buncher, and the dedicated beam transport and diagnostic elements. As the key components, the pre-buncher and the hybrid buncherrealize a two-stage velocity bunching process including the ballistic bunching and the phase space rotation. Therefore, they produce a certain number of wellbunched 5 MeV micro-bunches from the input 2 ns-50 ns electron pulse for the downstream LINAC II. The overall upgrade plan, developments of the critical components, as well as the latest beam test results will be reported