Möglichkeiten register-basierter Studien zur Erforschung seltener Erkrankungen

Nagel, Gabriële; Rosenbohm, Angela; Ünal, Hatice Demet Kiper; Rothenbacher, Dietrich; Ludolph, AC

doi:10.1055/s-0031-1301340

Cited by 3 publications

(2 citation statements)

References 5 publications

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“…Details can be found in previous publications [18] , [23] . In brief, all new suspected ALS cases are reported to the data collection office of the ALS registry Swabia at the Department of Neurology of Ulm University.…”

Section: Methodsmentioning

confidence: 99%

Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia

et al. 2014

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Objective of this paper was to investigate the incidence, potential geographical clusters and the completeness of the amyotrophic lateral sclerosis (ALS) registry in Southern Germany (Swabia).Age-standardized incidence rates (ASR) and ratios (SIR) as well as 95% confidence intervals (CI) were estimated at county level. Capture-recapture (CARE) procedures were applied taking data source dependency into account to estimate the quality of case ascertainment in the ALS registry Swabia. We identified 438 ALS cases (53% men, 47% women) in the target population of about 8.4 Mio inhabitants. The gender ratio (men∶women) was 1.1∶1. The mean age at onset of ALS was 63.8 (SD = 11.9) years for men and 66.0 (12.2) for women. The age distribution peaked in the age group 70–74 years. The ASR of ALS was 2.5 per 100,000 person years (PY; 95% CI: 2.3–2.7). The mean SIR was 1.1 per 100,000 PY (95% CI: 1.0–1.2). High SIR suggesting geographical clusters were observed in two counties (Göppingen and Bodenseekreis), but the variation was not statistically significant (p-values = 0.2 and 0.5). The percentage of CARE estimated missing cases was 18.9% in the registry yielding an ASR of 3.1 per 100,000 PY. The high coverage of the CARE estimated completeness of the ALS registry Swabia indicates excellent quality for future projects. Regional variations have to be investigated further.

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Section: Methodsmentioning

confidence: 99%

Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia

et al. 2014

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“…In addition, regular communication and publication of the data can reinforce the credibility of the registry data and increase the participation. In the ALS registry Swabia, this has been achieved by setting up an ALS-registry home-page and providing the clinicians with relevant published information [27]. …”

Section: Discussionmentioning

confidence: 99%

Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia

et al. 2013

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BackgroundThe social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS) is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2–5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS) registry Swabia, located in the South of Germany.Methods/DesignThe ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010) and prospective (from 01.10.2010) collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case–control study was implemented based on the registry that also included the collection of various biological materials.Retrospectively, 420 patients (222 men and 198 women) were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case–control study. All participants in the case–control study provided also a blood sample. The prospective part of the study is ongoing.DiscussionThe ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

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Professional development of the employees in the context of innovative alterations of society

Ogiyenko

2021

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Problem setting. In the article the professional development of workers is examined in the context of requirements of time in relation to distribution of innovations. Target of research is to display the inseparable connection between education and manufacturing in the modern conditions of development and to describe the suggestions for the improvement of the Labor legislation of Ukraine in the mean of professional development of the workers as the essential part of the up-to-date innovative processes. Analysis of recent researches and publications. A comparative analysis of the results of research by scientists Braňka J., Kowolik P., Sparreboom T., Staneva A., with the conclusions and suggestions of Ukrainian scientists: N. Inshyn, S. Prilipko, N. Vapnarchuk, O. Yaroshenko and others is carried out. Article’s main body. Attention is accented on the fact, that taking into account fast-moving development of innovations and their introduction faced with the resistance from the side of employees. At the same time the problem of introduction of innovations by a great extent consists of conscious rejection of the validity of the mutual efforts by employers and workers, directed on the professional development of the worker. It is also focused on a legislation about the professional development of workers, which does not give the definition of the concept «professional development», which accordingly draws a different interpretation of this phenomenon in law and rights and duties both workers and employers. The number of consequences were made. Conclusionsand prospects for the development. Firstly, in Ukraine the scientific and educational potential for introduction of the special programs of professional preparation of workers according to the production necessities of employer is provided. For the realization of such a potential it is necessary to attract the government in the process of professional development of workers which is capable to assist the introduction of special programs for preparation as it is the proprietor of basic powerful members of market of educational services. The participation of the government in creating the conditions for professional development of workers will fully answer its obligation as a state-member of International Labor Organization and the realization of co-operation between the government, establishments of education, employers and employees will outline the new vector of the development of the relations of social partnership in Ukraine. Secondly, for the distribution of innovative development of Ukrainian society the state approach needs to be renewed for creating the conditions of effective employment, in particular by changing the obligations of the state in the first part of the second article of the Labor Code of Ukraine, which are related to switchover to the market economy on obligations which are conditioned by the importance of innovative development of Ukraine. Thirdly, the Law of Ukraine «The professional development of workers» needs the conceptual update, in particular in part of fixing of concrete law mechanisms of co-operation between the government, the workers and employers and their associations, in the process of continuous studies of workers for the increase of the level of their professional capabilities.

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Möglichkeiten register-basierter Studien zur Erforschung seltener Erkrankungen

Cited by 3 publications

References 5 publications

Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia

Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia

Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia

Professional development of the employees in the context of innovative alterations of society

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