9 research outputs found

    Speeches on the occasion of the conferment of Honorary Citizenship of the UniversitÀt Stuttgart Nov. 26, 2004

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    Inhalt: Programm / Program (S. 7); Fritsch, Dieter (Rektor der UniversitĂ€t Stuttgart): Welcome address on the occasion of the conferment of Honorary Citizenship of the UniversitĂ€t Stuttgart upon Her Excellency Suzanne Mubarak (S. 9); MĂŒller, Ulrich (Minister im Staatsministerium und fĂŒr europĂ€ische Angelegenheiten des Landes Baden-WĂŒrttemberg): Grußwort / Welcoming address (S. 19); Mohn, Liz (GeschĂ€ftsfĂŒhrerin der Bertelsmann Verwaltungsgesellschaft mbH, Mitglied des Aufsichtsrates der Bertelsmann AG): Laudatio - Übetragung ins Arabische durch Prof. Dr. Ashraf Mansour (S. 27); Mubarak, Suzanne (First Lady of the Arab Republic of Egypt): On the occasion of the Reception of the Degree of EhrenbĂŒrger der UniversitĂ€t Stuttgart (S. 39); Der Herausgeber: Frau Suzanne Mubarak - Die erste Frau Ägyptens / Mrs Suzanne Mubarak - The First Lady of the Arab Repblic of Egypt (S. 49) - Die Autoren / Authors (S. 59

    Embracing monogenic Parkinson's disease: the MJFF Global Genetic PD Cohort

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    © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.Background: As gene-targeted therapies are increasingly being developed for Parkinson's disease (PD), identifying and characterizing carriers of specific genetic pathogenic variants is imperative. Only a small fraction of the estimated number of subjects with monogenic PD worldwide are currently represented in the literature and availability of clinical data and clinical trial-ready cohorts is limited. Objective: The objectives are to (1) establish an international cohort of affected and unaffected individuals with PD-linked variants; (2) provide harmonized and quality-controlled clinical characterization data for each included individual; and (3) further promote collaboration of researchers in the field of monogenic PD. Methods: We conducted a worldwide, systematic online survey to collect individual-level data on individuals with PD-linked variants in SNCA, LRRK2, VPS35, PRKN, PINK1, DJ-1, as well as selected pathogenic and risk variants in GBA and corresponding demographic, clinical, and genetic data. All registered cases underwent thorough quality checks, and pathogenicity scoring of the variants and genotype-phenotype relationships were analyzed. Results: We collected 3888 variant carriers for our analyses, reported by 92 centers (42 countries) worldwide. Of the included individuals, 3185 had a diagnosis of PD (ie, 1306 LRRK2, 115 SNCA, 23 VPS35, 429 PRKN, 75 PINK1, 13 DJ-1, and 1224 GBA) and 703 were unaffected (ie, 328 LRRK2, 32 SNCA, 3 VPS35, 1 PRKN, 1 PINK1, and 338 GBA). In total, we identified 269 different pathogenic variants; 1322 individuals in our cohort (34%) were indicated as not previously published. Conclusions: Within the MJFF Global Genetic PD Study Group, we (1) established the largest international cohort of affected and unaffected individuals carrying PD-linked variants; (2) provide harmonized and quality-controlled clinical and genetic data for each included individual; (3) promote collaboration in the field of genetic PD with a view toward clinical and genetic stratification of patients for gene-targeted clinical trials. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.Michael J. Fox Foundation for Parkinson's Research. Grant Number: ID 15015.02. NIHR Cambridge Biomedical Research Centre. Grant Number: BRC-1215-20014info:eu-repo/semantics/publishedVersio

    Social action research in urban Egypt

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    Privacy by design and customers' privacy and security concerns in the success of e-commerce

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    Purpose - The purpose of this paper is to gain a deeper understanding of customers' perceived privacy and security (CPPS) by investigating privacy concerns, data security, and exploring the factors that elevate or minimise these concerns in relation to organisations' practices.Design/methodology/approach - The research study utilises an explanatory research design. Data were collected from six organisations from different industry sectors through in-depth interviews with managers and from customers' through four focus groups of a high-user demographic segment.Findings - The paper identified Privacy by Design (PbD) in the area of organisations' practices as well as identifying the main areas of CPPS. These themes were used as the basis for an analysis of customer concerns instrumental to the success of e-commerce.Practical implications - The findings will inform the development of a general conceptual model. This will provide a better understanding of CPPS in general and in relation to the success of e-commerce web sites and transactional sites in particular.Originality/value - The value and the originality of the paper comes from the adoption of the "PbD" paradigm. Organisations have to explore the factors that elevate or minimise customers' concerns in relation to adopting and continuing to use online transactions. It is necessary for organisations to do this because when privacy and security practices are clearly disclosed, customers increase their intention to use, or continue to use online transactions

    Embracing Monogenic Parkinson's Disease: The MJFF Global Genetic PD Cohort.

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    BACKGROUND: As gene-targeted therapies are increasingly being developed for Parkinson's disease (PD), identifying and characterizing carriers of specific genetic pathogenic variants is imperative. Only a small fraction of the estimated number of subjects with monogenic PD worldwide are currently represented in the literature and availability of clinical data and clinical trial-ready cohorts is limited. OBJECTIVE: The objectives are to (1) establish an international cohort of affected and unaffected individuals with PD-linked variants; (2) provide harmonized and quality-controlled clinical characterization data for each included individual; and (3) further promote collaboration of researchers in the field of monogenic PD. METHODS: We conducted a worldwide, systematic online survey to collect individual-level data on individuals with PD-linked variants in SNCA, LRRK2, VPS35, PRKN, PINK1, DJ-1, as well as selected pathogenic and risk variants in GBA and corresponding demographic, clinical, and genetic data. All registered cases underwent thorough quality checks, and pathogenicity scoring of the variants and genotype-phenotype relationships were analyzed. RESULTS: We collected 3888 variant carriers for our analyses, reported by 92 centers (42 countries) worldwide. Of the included individuals, 3185 had a diagnosis of PD (ie, 1306 LRRK2, 115 SNCA, 23 VPS35, 429 PRKN, 75 PINK1, 13 DJ-1, and 1224 GBA) and 703 were unaffected (ie, 328 LRRK2, 32 SNCA, 3 VPS35, 1 PRKN, 1 PINK1, and 338 GBA). In total, we identified 269 different pathogenic variants; 1322 individuals in our cohort (34%) were indicated as not previously published. CONCLUSIONS: Within the MJFF Global Genetic PD Study Group, we (1) established the largest international cohort of affected and unaffected individuals carrying PD-linked variants; (2) provide harmonized and quality-controlled clinical and genetic data for each included individual; (3) promote collaboration in the field of genetic PD with a view toward clinical and genetic stratification of patients for gene-targeted clinical trials. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society

    High rates of prescribing antimicrobials for prophylaxis in children and neonates : results from the antibiotic resistance and prescribing in European children point prevalence survey

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    The worldwide antibiotic resistance and prescribing in european children (ARPEC) point prevalence survey: Developing hospital-quality indicators of antibiotic prescribing for children

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    Embracing Monogenic Parkinson's Disease: The MJFF Global Genetic PD Cohort

    No full text
    BACKGROUND: As gene-targeted therapies are increasingly being developed for Parkinson's disease (PD), identifying and characterizing carriers of specific genetic pathogenic variants is imperative. Only a small fraction of the estimated number of subjects with monogenic PD worldwide are currently represented in the literature and availability of clinical data and clinical trial-ready cohorts is limited. OBJECTIVE: The objectives are to (1) establish an international cohort of affected and unaffected individuals with PD-linked variants; (2) provide harmonized and quality-controlled clinical characterization data for each included individual; and (3) further promote collaboration of researchers in the field of monogenic PD. METHODS: We conducted a worldwide, systematic online survey to collect individual-level data on individuals with PD-linked variants in SNCA, LRRK2 VPS35, PRKN, PINK1, DJ-1, as well as selected pathogenic and risk variants in GBA and corresponding demographic, clinical, and genetic data. All registered cases underwent thorough quality checks, and pathogenicity scoring of the variants and genotype-phenotype relationships were analyzed. RESULTS: We collected 3888 variant carriers for our analyses, reported by 92 centers (42 countries) worldwide. Of the included individuals 3185 had a diagnosis of PD (ie, 1306 LRRK2, 115 SNCA, 23 VPS35 429 PRKN, 75 PINK1, 13 DJ-1, and 1224 GBA) and 703 were unaffected (ie, 328 LRRK2, 32 SNCA, 3 VPS35, 1 PRKN, 1 PINK1, and 338 GBA). In total, we identified 269 different pathogenic variants; 1322 individuals in our cohort (34\%) were indicated as not previously published. CONCLUSIONS: Within the MJFF Global Genetic PD Study Group, we (1) established the largest international cohort of affected and unaffected individuals carrying PD-linked variants; (2) provide harmonized and quality-controlled clinical and genetic data for each included individual; (3) promote collaboration in the field of genetic PD with a view toward clinical and genetic stratification of patients for gene-targeted clinical trials. 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society
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