scholarly journals The Joint Vasculitis Registry in German-speaking countries (GeVas) – a prospective, multicenter registry for the follow-up of long-term outcomes in vasculitis

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Christof Iking-Konert ◽  
Pia Wallmeier ◽  
Sabrina Arnold ◽  
Sabine Adler ◽  
Kirsten de Groot ◽  
...  

Abstract Background Vasculitides comprise a group of rare diseases which affect less than 5 in 10.000 individuals. Most types of vasculitis can become organ- and life-threatening and are characterized by chronicity, high morbidity and relapses, altogether resulting in significant morbidity and mortality. Previous studies have been either monocentric or mainly retrospective – studies with a prospective design mostly consisted of rather small cohorts of 100 to 200 patients. The aim of the Joint Vasculitis Registry in German-speaking countries (GeVas) is to record all patients who have been recently diagnosed with vasculitis or who have changed their treatment due to a relapse (inception cohort). In GeVas, data are collected prospectively in a multicenter design in Germany, Austria and Switzerland. By this approach, courses of vasculitis and their outcomes can be monitored over an extended period. Methods GeVas is a prospective, web-based, multicenter, clinician-driven registry for the documentation of organ manifestations, damage, long-term progress and other outcomes of various types of vasculitis. The registry started recruiting in June 2019. As of October 2020, 14 centers have been initiated and started recruiting patients in Germany. Involvement of sites in Austria and the German-speaking counties of Switzerland is scheduled in the near future. Discussion In June 2019, we successfully established a prospective multicenter vasculitis registry being the first of its kind in German-speaking countries. The participating centers are currently recruiting, and systematic analysis of long-term vasculitis outcomes is expected in the ensuing period. Trial registration German Clinical Trials Register (Deutsches Register Klinischer Studien): DRKS00011866. Registered 10 May 2019.

Author(s):  
Guilherme Finger ◽  
Maria Eduarda Conte Gripa ◽  
Tiago Paczko Bozko Cecchini ◽  
Tobias Ludwig do Nascimento

AbstractNocardia brain abscess is a rare clinical entity, accounting for 2% of all brain abscesses, associated with high morbidity and a mortality rate 3 times higher than brain abscesses caused by other bacteria. Proper investigation and treatment, characterized by a long-term antibiotic therapy, play an important role on the outcome of the patient. The authors describe a case of a patient without neurological comorbidities who developed clinical signs of right occipital lobe impairment and seizures, whose investigation demonstrated brain abscess caused by Nocardia spp. The patient was treated surgically followed by antibiotic therapy with a great outcome after 1 year of follow-up.


2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Masaki Nio ◽  
Motoshi Wada ◽  
Hideyuki Sasaki ◽  
Hiromu Tanaka ◽  
Masatoshi Hashimoto ◽  
...  

Abstract Background Although cancer occurrence following surgery for biliary atresia has gradually increased, the development of cholangiocarcinoma in a native liver survivor of biliary atresia is extremely rare. Case presentation A 3-month-old female patient with the correctable type of biliary atresia underwent a cystoduodenostomy. At 16 years of age, she underwent multiple surgeries including lysis of intestinal adhesions, ileostomy, and gastrojejunostomy at another hospital. At 54 years of age, she underwent lithotomy at the porta hepatis, resection of the residual cystic bile duct with gallbladder, and hepaticojejunostomy in Roux-en-Y fashion. As she approached the age of 63, her computed tomography scan showed no liver tumors. In the following year, she developed cholangiocarcinoma at the porta hepatis and underwent chemotherapy. However, the cancer progressed, and she died before she reached the age of 64 years. Conclusions Cholangiocarcinoma is extremely rare in patients with biliary atresia. However, physicians should follow up patients with biliary atresia as closely as possible, as malignant tumors secondary to biliary atresia may increase in number in the near future because of the growing number of long-term survivors with biliary atresia.


2017 ◽  
Vol 26 (1) ◽  
pp. 89-92 ◽  
Author(s):  
Anisha M. Fernandes ◽  
Maheshkumar M. Lakhe ◽  
Sanjay A. Pai

Toxoplasmosis is generally asymptomatic in immunocompetent individuals, but it can be life-threatening in immunocompromised patients. We present a case of a 62-year-old man with clinical features of acute appendicitis. Histology showed a transmural infiltrate of eosinophils. In addition, there were reactive lymphoid follicles with histiocytes in the submucosa and tachyzoites in the muscularis propria. Immunohistochemistry confirmed the diagnosis of toxoplasma appendicitis. Serological evaluation yielded negative results. Retrospective review of the history revealed that the patient was on long-term immunosuppressive therapy with methotrexate. The patient was treated with sulfamethoxazole-trimethoprim and is asymptomatic at 7-month follow-up. Toxoplasma appendicitis must be considered in the differential diagnosis of appendicitis in immunosuppressed patients.


Author(s):  
Tobias Eberwein

Media frauds often lead to lively public discussions about journalism’s professional identity and its social mandate. The paper uses the so-called Relotius case as a starting point for a systematic analysis of the responsibility of narrative journalists in an age of “fake news” and post-truth politics – and the question of how they can be held to account in the online realm. Claas Relotius counted as one of the most talented journalistic storytellers in the German-speaking world. In December 2018, however, the news magazine Der Spiegel revealed that he had fabricated many of his texts, either completely or partly. This revelation developed into one of the biggest German media scandals of the recent years and triggered a massive outcry, also in international media. A multi-method research design allows for a differentiated assessment of the Relotius case in particular and web-based media accountability processes in general: A literature review and problem-centered interviews with senior reporters demonstrate that stylistic devices of fiction have a long history in German narrative journalism – also in Spiegel magazine. A discourse analysis focusing on the public debate following the revelation of the scandal points out that many journalistic commenters, including Spiegel’s editorial board, displayed a clear lack of self-criticism in their discussion of the case, while non-professional watchbloggers broadened the scope of the analysis. The paper reflects the empirical results from a normative perspective, in order to illustrate the potentials and shortcomings of professional journalistic self-observation as opposed to external public control in online discourses.


10.2196/18588 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e18588
Author(s):  
Katherine Tassiopoulos ◽  
Carla Roberts-Toler ◽  
Carl J Fichtenbaum ◽  
Susan L Koletar

Background Longitudinal follow-up of older persons living with HIV is essential for the ascertainment of aging-related clinical and behavioral outcomes, and self-administered questionnaires are necessary for collecting behavioral information in research involving persons living with HIV. Web-based self-reported data collection results in higher data quality than paper-and-pencil questionnaires in a wide range of populations. The option of remote web-based surveys may also increase retention in long-term research studies. However, the acceptability and feasibility of web-based data collection in clinical research involving older persons living with HIV have never been studied. Objective This study aims to assess the acceptability and feasibility of a web-based survey to collect information on sexual, substance use, and physical activity behaviors; compare the data quality of the web-based survey with that of a paper-and-pencil questionnaire; and summarize web-based survey metrics. Methods This pilot study took place within the AIDS Clinical Trials Group A5322 study, a longitudinal cohort of men and women living with HIV (aged ≥40 years), followed at 32 clinical sites in the United States and Puerto Rico. A total of 4 sites participated in this study. A web-based survey was created using self-administered questionnaires typically completed in A5322 via paper and pencil. Pilot study participants completed these questionnaires via web-based survey at one research visit in lieu of paper-and-pencil administration. Two questions were added to assess feasibility, defined as participants’ perception of the ease of web-based survey completion (very hard, hard, easy, very easy), and their preferred format (computer or tablet, paper and pencil, no preference) for completing the questions in the future (acceptability). Feasibility and acceptability were summarized overall and by demographic and clinical characteristics; the proportion of evaluable data by web-based survey versus previously administered paper-and-pencil questionnaires (data quality) was compared for each question. Results Acceptability and feasibility were high overall: 50.0% (79/158) preferred computer or tablet, 38.0% (60/158) reported no preference, and 12.0% (19/158) preferred paper and pencil; 93.0% (147/158) reported survey completion easy or very easy. Older age was associated with lower odds of preferring computer or tablet to paper and pencil (odds ratio per 1-year increase in age: 0.91, 95% CI 0.85-0.98). Individuals who found the survey hard or very hard had a lower median neurocognitive test score than those who found it easy or very easy. Data quality with web-based survey administration was similar to or higher than that with paper-and-pencil administration for most questions. Conclusions Web-based survey administration was acceptable and feasible in this cohort of older adults living with HIV, and data quality was high. Web-based surveys can be a useful tool for valid data collection and can potentially improve retention in long-term follow-up studies.


2020 ◽  
Vol 2020 (6) ◽  
Author(s):  
Siddharth Pahwa ◽  
Susmit Bhattacharya ◽  
Siddhartha Mukhopadhyay ◽  
Ashok Verma

Abstract An aorto-esophageal fistula (AEF) is a rare yet life-threatening cause of upper gastrointestinal bleeding. We report our experience with open surgical management of two cases of AEF. Both cases presented with almost identical presentations: hematemesis and hemodynamic instability. The aorta in the first patient was normal; the defect was small and was repaired with a Dacron patch. The second patient had an aneurysmal aorta, which was replaced with a Dacron graft. Both cases were performed under partial bypass. The esophageal rent in both patients was debrided, primarily closed and buttressed with a vascularized intercostal pedicle. Nonavailability of endovascular personnel and equipment along with hemodynamic instability of the patient influenced our surgical strategy. Long-term follow-up of these patients is necessary to analyze the outcomes of our surgical repair.


2011 ◽  
Vol 17 (4) ◽  
pp. 490-494 ◽  
Author(s):  
E. Pampana ◽  
R. Gandini ◽  
M. Stefanini ◽  
S. Fabiano ◽  
A. Chiaravalloti ◽  
...  

“Carotid blowout syndrome” is defined as a hemorrhage caused by rupture of the carotid artery and its branches, and may be a severe complication of rhinopharyngeal carcinoma. This study aimed to highlight the usefulness and versatility of endovascular stent-graft placement as a rescue treatment in life-threatening carotid blowout syndrome. We describe the unconventional use of a 6×5 mm balloon-expandable coronaric covered stent in a patient with a diagnosis of spinocellular rhinopharyngeal carcinoma, followed by carotid blowout syndrome. Although long-term follow-up is needed to assess the eventuality of bleeding recurrence, the immediate clinical results were satisfactory.


2020 ◽  
Vol 17 (1) ◽  
Author(s):  
Tove Sohlberg ◽  
Peter Wennberg

Abstract Background Several studies have investigated the role of snus as an aid to become smoke-free, but few have focused on who use snus, how they perceive snus use, why and how they quit, and their perception of being non-snus users. The purpose of this paper is to describe snus cessation patterns. Methods Respondents are part of a 7-year follow-up of former smokers in Sweden. Initially, 1400 respondents were contacted regarding participation and 705 answered a web-based survey (response rate 50%). Out of them, 118 had used snus. The analyses include percentage distributions, as well as factor analyses of inventories, and configural frequency analysis in order to examine configurations of snus-related patterns. Results Over 80% found snus of great importance to succeed with smoking cessation and half of them continued to use snus on a long term. Those who experienced both physical and psychological effects of switching to snus were the ones who continued and vice versa; those who did not experience such effects quit using snus. None made use of professional help but had their own strategies (60%), and most respondents who quit obtained psychological benefits (68%). Conclusions The distinction between the concepts smoke-free, tobacco-free, and nicotine-free contributes to nuances in the debate on snus as harm reduction. Continued snus use does not mean that snus is not an effective aid to become smoke-free. Snus cessation is mostly mentioned in relation to advices on how to succeed, but the cessation process has rarely been described; therefore, this study expands the knowledge on this quite neglected topic and contributes to a more nuanced picture of snus cessation.


Sign in / Sign up

Export Citation Format

Share Document