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Building Expertise on FAIR Through Evolving Bring Your Own Data(BYOD) workshops: Describing the Data, Software, and Management-focused Approaches and Their Evolution

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Data Intelligence 2024年第2期6卷 429-456页

作者： césar H.Bernabé Lieze Thielemans Rajaram Kaliyaperumal claudio carta Shuxin Zhang c.lia w.g.van gelder Nirupama Benis Luiz Olavo Bonino da Silva Santos Ronald cornet Bruna dos Santos Vieira Nawel Lalout Ines Henriques Alberto camara Ballesteros Kees Burger Martijn g.Kersloot Friederike Ehrhart Esther van Enckevort chris T.Evelo Alasdair J.g.gray Marc Hanauer Kristina Hettne Joep de Ligt Arnaldo Pereira Nuria Queralt-Rosinach Erik Schultes Domenica Taruscio Andra waagmeester Mark D.wilkinson Egon L.willighagen Mascha Jansen Barend Mons Marco Roos Annika Jacobsen Biosemantics group Department of Human GeneticsLeiden University Medical CentreLeidenThe Netherlands NIHR Academic Fellow in general Practice University College London and The Royal Free NHS Foundation Trust National centre for Rare Diseases Istituto Superiore di SanitaRomeItaly Department of Medical Informatics Amsterdam UMC location University of AmsterdamMeibergdreef 9AmsterdamThe Netherlands Amsterdam Public Health Methodology&Digital HealthAmsterdamThe Netherlands Health-Rl UtrechtThe Netherlands Semantics Services and Cybersecurity groupUniversity of TwenteEnschedeThe Netherlands Department of Medical Imaging Radboud Institute for Health SciencesRadboud University Medical CenterNijmegenThe Netherlands Department of Medical BioSciences Radboud University Medical CenterNijmegenThe Netherlands The Duchenne Parent Project VeneendaalThe Netherlands Departamento de Biotecnologia-Biologia Vegetal Escuela Tecnica Superior de Ingenieria AgronomicaAlimentaria y de BiosistemasCentro de Biotecnologia y Genomica de PlantasUniversidad Politecnica de Madrid(UPM)-Instituto Nacional de Investigacion y Tecnologia Agraria y Alimentaria-CSIC(INIA-CSIC).Campus MontegancedoPozuelo de Alarcon(Madrid)Spain castor AmsterdamThe Netherlands Department of Bioinformatics-BigcaT Maastricht UniversityMaastrichtThe Netherlands University Medical center groningen University of GroningenGroningenThe Netherlands Maastricht centre for Systems Biology(MacSBio) Maastricht UniversityMaastrichtThe Netherlands Department of computer Science Heriot-Watt UniversityEdinburghUK INSERM US14-OrphanetPlateforme Maladies RaresParisFrance centre for Digital Scholarship Leiden University LibrariesThe Netherlands center for Molecular Medicine Cancer Genomics NetherlandsDepartment of GeneticsUniversity Medical Center UtrechtUniversity UtrechtThe Netherlands University of Aveiro DETI/IEETAAveiroPortugal gO FAIR Foundation LeidenThe Netherlands The Leiden Academic center for Drug Research LeidenThe Netherlands Micel

Since 2014,"Bring Your Own Data"workshops(BYODs)have been organised to inform people about the process and benefits of making resources Findable,Accessible,Interoperable,and Reusable(FAIR,and the FAIRification process).The BYOD workshops'content and format differ depending on their goal,context,and the background and needs of ***-focused BYODs educate domain experts on how to make their data FAIR to find new answers to research ***-focused BYODs promote the benefits of making data FAIR and instruct project managers and policy-makers on the characteristics of FAIRification ***-focused BYODs gather software developers and experts on FAIR to implement or improve software resources that are used to support ***,these BYODs intend to foster collaboration between different types of stakeholders involved in data management,curation,and reuse(*** experts,trainers,developers,data owners,data analysts,FAIR experts).The BYODs also serve as an opportunity to learn what kind of support for FAIRification is needed from different communities and to develop teaching materials based on practical examples and *** this paper,we detail the three different structures of the BYODs and describe examples of early BYODs related to plant breeding data,and rare disease registries and biobanks,which have shaped the structure of the *** discuss the latest insights into making BYODs more productive by leveraging our almost ten years of training experience in these workshops,including successes and encountered ***,we examine how the participants'feedback has motivated the research on FAIR,including the development of workflows and software.

关键词： FAIR FAIRification FAIR expertise Bring Your Own Data workshop BYOD

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Impact of dams on flood occurrence of selected rivers in the United States

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Frontiers of Earth Science 2017年第2期11卷 268-282页

作者： Xuefei MEI P.H.A.J.M. van gelder Zhijun DAI Zhenghong TANg State Key Laboratory of Estuarine & coastal Research East China Normal University Shanghai 200062 China Faculty of Technology Policy and Management Delft University of Technology 2628BX Delft the Netherlands community and Regional Planning Program University of Nebraska-Lincoln Lincoln NE 68588-0105 USA

A significant large number of dams have been constructed in the past two centuries in the United States. These dams＇ ability to regulate downstream flooding has received world-wide attention. In this study, data from 38 rivers distributed over the entire conterminous Untied States with extensive pre- and post-dam annual peak discharge records, were collected to research the impacts of various dams on the flood behaviors at a national scale. The results indicate that dams have led to significant reductions in flood magnitude for nearly all of the sites; the decrease rate in the mean of annual peak discharge varies between 7.4% and 95.14%, except for the Dead River, which increased by 1.46%. Because of dams＇ effective- ness, the probability density curve of annual peak flow changes from a flat to peaked shape because both the range and magnitude of high discharges are decreased. More- over, the potential impact of dams on flood characteristics were closely related to the dam＇s geographic location and function, the ratio of the storage capacity of the dam to the mean annual runoff of the river （c/R）, and the ratio of reservoir storage capacity to the area of its drainage （c/D）. Specifically, the effects of dams on annual peak flows were more related to latitude than longitude. compared with dams built for other purposes, the dam exclusively used for flood management cut off more flood peaks. Increases in the ratios of c/R and c/D increased the degree of modification of annual maximum discharge.

关键词： flood characteristics river discharge dam,flood modification

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RAcE研究中持续性孤立性房颤的临床特征

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世界核心医学期刊文摘（心脏病学分册） 2005年第7期1卷 52-53页

作者： Rienstra M. Hagens V.E. van Veldhuisen D.J. I.c. van gelder 苏畅 Dr. Department of cardiology Thoraxcenter University Hospital P.O. Box 30.001 9700 RB Groningen Netherlands

In the RAte control versus Electrical cardioversion for persistent atrial fibrillation(RAcE) study, 522 patients were randomized to either rate or rhythm control therapy. Lone atrial fibrillation(AF) was present in 89 patients. Demographics, cardiovascular mortality and morbidity, and quality of life were compared between patients with lone AF and those with underlying structural heart disease. Patients with lone AF were significantly younger(65±10 vs 69±8 years) and had fewer complaints of fatigue(p=0.01) and dyspnea(p=0.005). with lone AF, quality-of-life scoreswere higher on almost all 8 Medical Outcomes Study Short-Form health survey questionnaire subscales, and comparable to healthy, age-and gender-matched controls. Mean follow-up was 2.3±0.6 years. cardiovascular end points occurred in 9 patients with lone AF(10%),consisting of death(all bleedings) 3%, thromboembolic complications in 3%, nonfatal bleeding in 2%, and pacemaker implantation in 2%, but no heart failure and severe adverse effects due to antiarrhythmic drugs occurred. End points occurred in 95 patients(22%) with underlying diseases. Heart failure and severe adverse effects from drugs did not occur in patients with lone AF in this study. Despite the absence of demonstrable cardiovascular and cerebrovascular disease, lone AF is associated with bleeding and thromboembolism.

关键词：孤立性房颤 RAcE 持续性房颤心脏电复律抗心律失常药起搏器植入术血栓栓塞心血管疾病呼吸困难健康问卷调查

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结肠直肠癌高风险患者的检测:cT结肠成像与结肠镜检查的比较

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世界核心医学期刊文摘（胃肠病学分册） 2005年第1期1卷 31-32页

作者： van gelder R.E. Nio c.Y. Florie J. 赵天智 Department of Radiology Acad. Med. Ctr. Univ. of Amsterdam Amsterdam Netherlands

Background & Aims: To date, computed tomographic (cT)colonography has been compared with an imperfect test,colonoscopy, and has been mainly assessed in patients with positive screening test results or symptoms. Therefore, the available data may not apply to screening of patients with a personal or family history of colorectal polyps or cancer (increased risk). we prospectively investigated the ability of cT colonography to identify individuals with large (≥ 10 mm) colorectal polyps in consecutive patients at increased risk for colorectal cancer. Methods: A total of 249 consecutive patients at increased risk for colorectal cancer underwent cT colonography before colonoscopy. Two reviewers interpreted cT colonography examinations independently. Sensitivity, specificity, and predictive values were determined after meticulous matching of cT colonography with colonoscopy. Unexplained large falsepositive findings were verified with a second-look ***: In total, 31 patients (12% ) had 48 large polyps at *** included 8 patients with 8 large polyps that were overlooked initially and detected at the second-look *** 6 of 8 patients, the missed polyp was the only large lesion. with cT colonography, 84% of patients (26/31)with large polyp(s) were identified, paired for a specificity of 92% (200-201/218). Positive and negative predictive values were 59%-60% (26/43-44) and 98% (200-201/205-206), *** colonography detected 75%-77% (36-37/48) of large polyps, with 9 of the missed lesions being flat. conclusions:cT colonography and colonoscopy have a similar ability to identify individuals with large polyps in patients at increased risk for colorectal cancer. The large proportion of missed flat lesions warrants further study.

关键词：结肠直肠癌 cT结肠成像结肠镜检结肠直肠息肉筛查结果阴性预测值阳性预测值假阳性结果精确匹配个体能力

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房颤伴晚期慢性心力衰竭患者中低心率与高心率的比较:对临床状况、神经内分泌及存活率的影响

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世界核心医学期刊文摘（心脏病学分册） 2006年第9期2卷 37-37页

作者： Rienstra M. van gelder I.c. van Den Berg M.P. 孙凯 Department of cardiology University Medical Center GroningenUniversity of GroningenP.O.Box 30.0019700 RB GroningenNetherlands

Background: Atrial fibrillation is common in chronic heart failure. Long-term restoration of sinus rhythm is generally unsuccessful. It may be speculated tha t higher heart rates are unfavorable, since this may lead to tachycardiomyopathy , but there are no data which have examined this. Methods and results: Seventy- seven patients with atrial fibrillation and advanced chronic heart failure, age 70±7 years, left-ventricular ejection fraction 0.23±0.08, 61%with ischemic e tiology were included. Patients were dichotomized according to the median heart rate(80 bpm) at inclusion(39 patients with “low”heart rate and 38 patients wit h “high”heart rate). At baseline, both patient groups were remarkably comparab le. After a mean follow-up of 3.3±0.9 years, mortality was comparable(62%vers us 55%, p=non-significant). An independent relation was found between lower he art rate and survival, in addition to absence of hypertension, digoxin use, and higher N-ANP, dopamine, and renin levels. conclusion: In the present analysis, patients with atrial fibrillation and advanced chronic heart failure with higher heart rates are comparable to those with lower heart rates. Not higher heart ra tes at baseline but, on the contrary, lower heart rates seem associated with a w orse outcome.

关键词：慢性心力衰竭患者神经内分泌心率临床状况房颤晚期存活率心动过速性心肌病

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在高血压患者中对持续性房颤的节律控制治疗使心血管病的发病率和死亡率增加:来自RAcE研究的资料

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世界核心医学期刊文摘（心脏病学分册） 2007年第8期3卷 38-38页

作者： Rienstra M. van Veldhuisen D.J. crijns H.J.g.M. van gelder I.c. 王海玲 Department of cardiology University Medical Center Groningen University of Groningen PO Box 30.001 9700 RB Groningen Netherlands

目的:调查在对持续性房颤(AF)患者进行心率控制和节律控制治疗期间,高血压对发病率和死亡率的影响。方法和结果:在心率控制与电转复比较(RAcE)研究中,522例患者(其中256例患高血压)被随机分配到心率控制组或节律控制组。比较高血压患者... 详细信息

目的:调查在对持续性房颤(AF)患者进行心率控制和节律控制治疗期间,高血压对发病率和死亡率的影响。方法和结果:在心率控制与电转复比较(RAcE)研究中,522例患者(其中256例患高血压)被随机分配到心率控制组或节律控制组。比较高血压患者和非高血压患者的心血管病发病率和死亡率。高血压患者的年龄较大(69±8岁vs67±9岁,P=0.01)、女性较多(PcH ADS2评分较高(2.2±1.0vs1.0±0.9,P<0.001)、

关键词：持续性房颤心血管病 RAcE 心率控制电转复合并糖尿病者控制组终点事件植入起搏器抗心律

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持续性房颤患者节律控制治疗的性别差异:来自心率控制与心脏电复律(RAcE)研究的资料

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世界核心医学期刊文摘(心脏病学分册) 2006年第4期 61-61页

作者： Rienstra M. vanVeldhuisen D.J. Hagens V.E. I.c. van gelder 朱冰坡 Department of cardiology University Medical Center University of Groningen P.O. Box 001 9700 RB Groningen Netherlands Dr.

OBJEcTIVES: This study sought to compare whether gender affects the outcome of rate versus rhythm control treatment in patients with persistent atrial fibrillation(AF). BAcKgROUND: Large trials have shown that rate control is an acceptable alternative to rhythm control. However, the effects of treatment may differ between male and female patients. METHODS: In the Rate control versus Electrical cardioversion(RAcE)study,522 patients(192 female)were included and randomized to rate or rhythm control. The occurrence of cardiovascular end points and quality of life(QoL)were compared between female and male patients. RESULTS: At baseline, female patients differed from male patients with regard to age, underlying heart disease, diabetes mellitus, and left ventricular function. Female patients had more AF-related complaints, and QoL was significantly lower. After a mean follow-up of 2.3±0.6 years,cardiovascular morbidity and mortality was equally distributed between female(21%)and male patients(19%). However, in contrast to male patients, female patients randomized to rhythm control developed more end points(adjusted hazard ratio was 3.1[95%confidence interval 1.5 to 6.3], p=0.002), mainly heart failure, thromboembolic complications, and adverse effects of antiarrhythmic drugs, compared with rate control randomized female patients. During follow-up, QoL in female patients remained worse compared with that for male patients. Randomized strategy did not influence QoL in female patients. cONcLUSIONS: In female patients with persistent AF,a rhythm control approach leads to more cardiovascular morbidity and mortality. Because treatment strategy did not influence QoL in female patients, a rate control approach may be considered in these patients.

关键词：心率控制节律控制持续性房颤心脏电复律患者 RAcE

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cT结肠成像与结肠镜在无症状筛查人群诊断价值比较:Meta分析

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国际医学放射学杂志 2011年第5期 508-508页

作者： M.c.de Haan R.E.van gelder A.graser S.Bipat J.Stoker 倪鸣飞 Department of Radiology G1-1Academic Medical CenterAmsterdamMeibergdreef 91105 AZAmsterdamThe Netherlands

目的既往cT结肠成像的Meta分析主要包括中、高危人群因素,其可能会高估筛查的诊断价值。本研究采用Meta分析旨在判断cT结肠成像的筛查价值。方法使用

关键词：结肠直肠癌筛查 cT结肠成像结肠镜敏感度和特异度

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