registry

Registry
  • 文章类型: Journal Article
    赋形剂过敏是一种罕见的,但可能是致命的,药物过敏的形式。在没有强制性药物成分披露的地区,诊断赋形剂过敏仍然很困难,并且是药物安全性的重要障碍。
    为了研究基于药物过敏登记的赋形剂数据库的可行性,以确定有药物过敏史的患者中潜在的赋形剂罪魁祸首,以聚乙二醇(PEG)为例。
    通过编制与香港报告最多的50种药物过敏罪魁祸首的所有可用配方有关的赋形剂清单,创建了赋形剂注册表。赋形剂信息的可用性,并分析了其与单个药物配方总数的关系。检查所有制剂是否存在PEG。
    在香港报告的前50名药物过敏罪魁祸首的所有配方中,有36.5%(729/2,000)的完整赋形剂信息可用。每种药物的制剂数量与可用赋形剂信息的比例相关(ρ=0.466,p=0.001)。在729种配方中,109(15.0%)和620(85.0%)被确认含有和不含有PEG,分别。其他1,271(63.6%)制剂的赋形剂信息不可用。我们无法确认香港前50名药物过敏罪魁祸首中是否存在PEG。
    在没有强制性药物成分披露的国家,赋形剂数据库不太可能识别药物过敏患者中潜在的赋形剂过敏.迫切需要立法强制实施强制性和普遍的成分披露。
    UNASSIGNED: Excipient allergy is a rare, but potentially lethal, form of drug allergy. Diagnosing excipient allergy remains difficult in regions without mandatory drug ingredient disclosure and is a significant barrier to drug safety.
    UNASSIGNED: To investigate the feasibility of a drug allergy registry-based excipient database to identify potential excipient culprits in patients with history of drug allergy, using polyethylene glycol (PEG) as an example.
    UNASSIGNED: An excipient registry was created by compiling the excipient lists pertaining to all available formulations of the top 50 most reported drug allergy culprits in Hong Kong. Availability of excipient information, and its relationship with total number of formulations of individual drugs were analysed. All formulations were checked for the presence or absence of PEG.
    UNASSIGNED: Complete excipient information was available for 36.5% (729/2,000) of all formulations of the top 50 reported drug allergy culprits in Hong Kong. The number of formulations for each drug was associated with proportion of available excipient information (ρ = 0.466, p = 0.001). Out of 729 formulations, 109 (15.0%) and 620 (85.0%) were confirmed to contain and not contain PEG, respectively. Excipient information was not available for the other 1,271 (63.6%) formulations. We were unable to confirm the presence or absence of PEG in any of the top 50 drug allergy culprits in Hong Kong.
    UNASSIGNED: In countries without mandatory drug ingredient disclosure, excipient databases are unlikely able to identify potential excipient allergy in drug allergy patients. Legislations to enforce mandatory and universal ingredient disclosure are urgently needed.
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  • 文章类型: Journal Article
    目的:CArdioSurgEry心房颤动(CASE-AF)注册是一个前瞻性的,多中心研究,用于收集和分析外科房颤治疗的真实世界数据。本研究旨在评估长期持续性房颤一年的手术效果。
    方法:总共,17个中心连续包括所有符合条件的持续房颤持续≥1年的患者。排除标准是缺少知情同意或年龄<18岁。对于患者报告的结果测量,使用EHRA评分。无房颤(根据心电图检查结果,包括动态心电图和/或植入装置),没有再消融,没有进一步的心脏复律,并且在3个月的消隐期后没有因AF而再次住院,定义了在1年时没有AF复发。
    结果:从2017年1月至2020年1月,共有1115例患者纳入CASE-AF。其中,202名患者(平均年龄69.7±7.8岁,27.2%女性)接受长期持续性房颤手术消融术(研究队列),主要伴有左心耳闭合(n=180[89%],切除n=75[42%]),主要是同时进行(n=174[86%])和仅左心房手术(n=144[71%])。早期死亡率(30d)为2.0%,发病率低。随访时(中位数为14.4个月,IQR,12.7-17.6个月,100%完成),106例患者(56%)无房颤复发,其中93%无症状。房颤复发伴随着房颤相关的再次住院(n=12,p=0.003),DC休克复律(n=23,p<0.001),AF消融(n=7,p=0.003),和冲程(n=3,p=0.059)。多变量分析确定冷冻消融,主要在心内进行,包括额外的左心房(74%)和双心房(42%)病变,作为无房颤复发的重要因素(比值比2.7,95%置信区间1.07-6.79,p=0.035).
    结论:根据CASE-AF,同时使用心内膜冷冻消融术时,LSPAF的手术消融术最有效.持续的随访可以进一步阐明有效的治疗策略。
    背景:CASE-AF注册表,ClinicalTrials.gov,NCT03091452,注册于2017年3月27日。
    OBJECTIVE: The CArdioSurgEry Atrial Fibrillation (CASE-AF) registry is a prospective, multicentre study for collecting and analysing real-world data of surgical atrial fibrillation (AF) treatment. This study aimed to evaluate outcomes of surgery for long-standing persistent AF at 1 year.
    METHODS: In total, 17 centres consecutively include all eligible patients with continuous AF lasting for ≥1 year. Exclusion criteria are missing informed consent or age <18 years. For patient-reported outcomes measures, the European Heart Rhythm Association score was used. No presence of AF (based on ECG findings including Holter ECG and/or implanted devices), no re-ablation, no further cardioversion and no rehospitalization due to AF after a 3-month blanking period defined no AF recurrence at 1 year.
    RESULTS: From January 2017 to January 2020, a total of 1115 patients were enrolled in CASE-AF. Of them, 202 patients (mean age 69.7 ± 7.8 years, 27.2% female) underwent surgical ablation of long-standing persistent AF (study cohort), mostly accompanied by left atrial appendage closure (n = 180 [89%], resection n = 75 [42%]) and predominantly performed as concomitant (n = 174 [86%]) and left atrial only procedure (n = 144 [71%]). Early mortality (30 days) was 2.0% and morbidity was low. At follow-up (median 14.4 months, interquartile range, 12.7-17.6 months, 100% complete), 106 patients (56%) had no AF recurrence and 93% of them were asymptomatic. AF recurrence was accompanied by AF-related rehospitalization (n = 12, P = 0.003), direct current shock cardioversion (n = 23, P < 0.001), AF ablation (n = 7, P = 0.003) and stroke (n = 3, P = 0.059). Multivariable analysis identified cryoablation, predominantly performed endocardially including additional left atrial (74%) and biatrial (42%) lesions, as a significant factor for freedom from AF recurrence (odds ratio 2.7, 95% confidence interval 1.07-6.79, P = 0.035).
    CONCLUSIONS: According to CASE-AF, surgical ablation of long-standing persistent AF is most effective when concomitantly performed using endocardial cryoablation. Ongoing follow-up allows further elucidation of efficacious treatment strategies.
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  • 文章类型: Journal Article
    背景:肌萎缩侧索硬化症(ALS)是一种神经退行性疾病,几乎没有确定的危险因素,也没有已知的治愈方法。假设基因-环境相互作用,尤其是对于病因不明的散发性ALS病例(90-95%)。我们旨在调查ALS的危险因素,包括暴露于环境空气中的毒物。
    方法:这项基于人群的病例对照研究包括267例ALS病例(来自美国[美国]疾病控制和预防中心/有毒物质和疾病登记机构国家ALS登记和生物库)和267岁,性别,和县匹配的控制通过商业数据库确定。通过将人口普查道级别的美国环境保护署(EPA)2011年国家空气毒物评估(NATA)数据分配给参与者的住宅邮政编码,对34种环境空气毒物进行了暴露评估。条件逻辑回归用于计算单个化合物的调整后比值比(aOR)和95%置信区间(CI)。化学类,和整体曝光。使用条件逻辑回归和贝叶斯分组加权四分位数和(GWQS)模型进行敏感性分析,以评估结果的完整性。
    结果:使用2011年NATA,氯乙烯的最高暴露四分位数(Q4)与最低暴露四分位数(Q1)相比(aOR=6.00,95%CI:1.87-19.25),2,4-二硝基甲苯(aOR=5.45,95%CI:1.53-19.36),氰化物(aOR=4.34,95%CI:1.52-12.43),镉(aOR=3.30,95%CI:1.11-9.77),和二硫化碳(aOR=2.98,95%CI:1.00-8.91)与ALS的几率增加有关。住宅空气硒与ALS呈负相关(第二四分位数[Q2]与Q1:aOR=0.38,95%CI:0.18-0.79)。此外,居民暴露于有机/氯化溶剂(Q4vsQ1:aOR=2.62,95%CI:1.003-6.85)与ALS相关.
    结论:我们使用2011年NATA与居民区联系的调查结果提供了与2,4-二硝基甲苯对照相比,ALS风险增加的证据。氯乙烯,氰化物,和有机/氯化溶剂类。这强调了持续监测高危人群潜在暴露的重要性。
    BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder with few risk factors identified and no known cure. Gene-environment interaction is hypothesized especially for sporadic ALS cases (90-95%) which are of unknown etiology. We aimed to investigate risk factors for ALS including exposure to ambient air toxics.
    METHODS: This population-based case-control study included 267 ALS cases (from the United States [U.S.] Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry National ALS Registry and Biorepository) and 267 age, sex, and county-matched controls identified via a commercial database. Exposure assessment for 34 ambient air toxicants was performed by assigning census tract-level U.S. Environmental Protection Agency (EPA) 2011 National Air Toxics Assessment (NATA) data to participants\' residential ZIP codes. Conditional logistic regression was used to compute adjusted odds ratios (aORs) and 95% confidence intervals (CIs) for individual compounds, chemical classes, and overall exposure. Sensitivity analyses using both conditional logistic regression and Bayesian grouped weighted quartile sum (GWQS) models were performed to assess the integrity of findings.
    RESULTS: Using the 2011 NATA, the highest exposure quartile (Q4) compared to the lowest (Q1) of vinyl chloride (aOR = 6.00, 95% CI: 1.87-19.25), 2,4-dinitrotoluene (aOR = 5.45, 95% CI: 1.53-19.36), cyanide (aOR = 4.34, 95% CI: 1.52-12.43), cadmium (aOR = 3.30, 95% CI: 1.11-9.77), and carbon disulfide (aOR = 2.98, 95% CI: 1.00-8.91) was associated with increased odds of ALS. Residential air selenium showed an inverse association with ALS (second quartile [Q2] vs. Q1: aOR = 0.38, 95% CI: 0.18-0.79). Additionally, residential exposure to organic/chlorinated solvents (Q4 vs Q1: aOR = 2.62, 95% CI: 1.003-6.85) was associated with ALS.
    CONCLUSIONS: Our findings using the 2011 NATA linked by census tract to residential area provide evidence of increased ALS risk in cases compared to controls for 2,4-dinitrotoluene, vinyl chloride, cyanide, and the organic/chlorinated solvents class. This underscores the importance of ongoing surveillance of potential exposures for at-risk populations.
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  • 文章类型: Journal Article
    目的:基于人工智能(AI)的命名实体提取(NER)的进展提高了从非结构化,叙事,电子健康记录中的自由文本数据。然而,缺乏现成的工具和工作流程来鼓励经常缺乏AI经验和培训的临床医生使用。我们试图证明一个案例研究,用于开发眼科疾病的自动化注册表,并为临床医生提供现成的低代码工具。
    方法:我们从2019年11月至2022年5月的单中心成人门诊眼科诊所提取了去识别的电子临床记录。我们使用低代码注释软件工具(Prodigy)来注释诊断并训练定制的spaCyNER模型以提取诊断并创建眼科疾病注册表。
    结果:从33,455份临床记录中提取了123,194份诊断实体。删除非字母数字字符后,共提取了5070个不同的诊断实体.NER模型的精度为0.8157,召回率为0.8099,F评分为0.8128。
    结论:我们提出了一个案例研究,使用基于低代码人工智能的NLP工具来创建自动化的眼科疾病注册表。该工作流程创建了一个NER模型,具有从自由文本电子临床记录中提取诊断的中等总体能力。我们已经为临床医生制作了一个现成的工具,可以在他们的机构中实施这种低代码的工作流程,并鼓励采用人工智能方法在电子健康记录中进行病例查找。
    OBJECTIVE: Advances in artificial intelligence (AI)-based named entity extraction (NER) have improved the ability to extract diagnostic entities from unstructured, narrative, free-text data in electronic health records. However, there is a lack of ready-to-use tools and workflows to encourage the use among clinicians who often lack experience and training in AI. We sought to demonstrate a case study for developing an automated registry of ophthalmic diseases accompanied by a ready-to-use low-code tool for clinicians.
    METHODS: We extracted deidentified electronic clinical records from a single centre\'s adult outpatient ophthalmology clinic from November 2019 to May 2022. We used a low-code annotation software tool (Prodigy) to annotate diagnoses and train a bespoke spaCy NER model to extract diagnoses and create an ophthalmic disease registry.
    RESULTS: A total of 123,194 diagnostic entities were extracted from 33,455 clinical records. After decapitalisation and removal of non-alphanumeric characters, there were 5070 distinct extracted diagnostic entities. The NER model achieved a precision of 0.8157, recall of 0.8099, and F score of 0.8128.
    CONCLUSIONS: We presented a case study using low-code artificial intelligence-based NLP tools to produce an automated ophthalmic disease registry. The workflow created a NER model with a moderate overall ability to extract diagnoses from free-text electronic clinical records. We have produced a ready-to-use tool for clinicians to implement this low-code workflow in their institutions and encourage the uptake of artificial intelligence methods for case finding in electronic health records.
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  • 文章类型: Journal Article
    背景:国际关节注册在全球范围内提供了与全膝关节置换术有关的大量信息。这些数据的蒸馏可能具有挑战性,特别是随着每年建立更多的关节成形术登记处。因此,我们旨在从这些注册表中提供与初次全膝关节置换术有关的关键信息。感兴趣的具体问题包括:哪种固定类型在TKA中更胜一筹?约束水平对临床表现有影响?部分膝关节置换在注册中的表现如何?髌骨重修会导致更好的结果吗?是否有特定的植入物表现特别好或不好?
    方法:对全球主要的英语膝关节置换注册进行了全面审查。鉴于全球注册管理机构的数量不断扩大,不可能对所有登记册进行全面审查,因此,我们对主要的英语膝关节置换术注册进行了详细的回顾.本文确定并介绍了植入物性能的主要趋势和发展。
    结果:全膝关节置换手术的翻修率低于单室和髌股关节置换手术。在所有膝关节置换手术中,髌股关节置换的失败率最高。交叉保留(CR)TKR设计在所有注册表中都比后路稳定(PS)设计具有更好的结果。在原发性TKR中,髌骨重铺似乎比未重铺的髌骨具有优势。
    结论:我们基于来自英语关节成形术注册的数据,介绍了TKA的效用和性能的当前全球趋势。
    BACKGROUND: International joint registries provide high volumes of information in relation to the performance of total knee arthroplasty on a global scale. Distillation of this data can be challenging, particularly with the establishment of more arthroplasty registries on a yearly basis. We therefore aim to present key information from these registries in relation to primary total knee arthroplasty. The specific questions of interest include: Which fixation type is superior in TKA? Does the level of constraint impact on clinical performance? How do partial knee replacements perform in the registries? Does patellar resurfacing lead to superior results? Are there any specific implants which perform particularly well or poorly?
    METHODS: A comprehensive review of the major English-speaking knee arthroplasty registries across the globe was performed. Given the expanding large number of registries worldwide, it was not possible to perform a comprehensive review of all registries and so, a detailed review of the major English-speaking knee arthroplasty registries was included. Key trends and developments in implant performance were identified and presented in the current article.
    RESULTS: Total knee replacements have lower revision rates than both unicompartmental and patellofemoral joint replacement procedures. Patellofemoral joint replacements have the highest failure rate of all knee replacement procedures. Cruciate-Retaining (CR) TKR designs have superior outcomes to Posterior-Stabilized (PS) designs across all registries. Patellar resurfacing appears to confer an advantage over non-resurfaced patellas in primary TKR.
    CONCLUSIONS: We present current global trends in the utility and performance of TKA based on data from English-speaking arthroplasty registries.
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  • 文章类型: Journal Article
    我们提供了有关初次全髋关节置换术的国际注册信息。感兴趣的具体问题包括哪些轴承在全髋关节置换术(THA)中更好,哪种固定类型是最佳的,做任何特定的植入物比其他更好,髋部骨折背景的最新更新是什么?这是对全球主要的英语髋关节置换术注册的全面回顾。本文确定并介绍了植入物性能的主要趋势和发展。对所有注册管理机构的审查要点证实,聚乙烯上陶瓷和聚乙烯上金属仍然是最常见的轴承。在大多数地区,骨水泥股骨茎的使用正在增加。混合固定现在是注册历史上首次在英国最常见的固定方法。在大多数区域,未骨水泥的股骨茎对假体周围骨折的早期翻修率高于骨水泥的茎。双移动性(DM)轴承的使用正在增加,并且显示出比单极轴承更高的早期翻修率-它们倾向于用于更复杂的适应症(骨折/肿瘤/翻修),并且当仅用于骨关节炎的主要选择性THA时,它们显示出与单极轴承相似的翻修率。我们根据来自全球的当前注册表数据介绍了THA的当前趋势。在特定的临床环境中,THA未加固的股骨柄固定和DM轴承正在出现值得关注的临床信号。应在整个文献中监测这些信号,以减少整体修订负担。
    We present key information from international registries in relation to primary total hip arthroplasty. The specific questions of interest include which bearings are superior in total hip arthroplasty (THA), which fixation types are optimal, do any specific implants perform better than others, and what is the latest update in the hip fracture setting? This is a comprehensive review of the major English-speaking hip arthroplasty registries across the globe. Key trends and developments in implant performance are identified and presented in the current article. Key points from review of all registries confirm that ceramic-on-polyethylene and metal-on-polyethylene continue to be the commonest bearings. The use of cemented femoral stems is increasing across most regions. Hybrid fixation is now the commonest fixation method in the UK for the first time in registry history. Uncemented femoral stems have a higher early revision rate for periprosthetic fracture than cemented stems across most regions. Dual mobility (DM) bearings are increasing in use and show higher early revision rates than unipolar bearings-they tend to be used for more complex indications (fracture/tumor/revision) and show similar revision rates to unipolar bearings when used exclusively in primary elective THA for osteoarthritis. We present current trends in THA based on current registry data from across the globe. Clinical signals of concern are emerging for THA uncemented femoral stem fixation and DM bearings in specific clinical contexts. These signals should be monitored across the literature in order to reduce the overall revision burden.
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  • 文章类型: Journal Article
    癌症是静脉血栓栓塞(VTE)的危险因素。我们旨在通过进行一项基于瑞典注册的全国性研究来定义首次VTE患者的性别特异性癌症风险,该研究包括298172例VTE患者和1185079例匹配对照。这包括在VTE诊断前一年或一年内诊断为癌症的44685名患者。女性VTE患者的多变量校正比值比高于男性VTE患者(5.5[99%置信区间5.4-5.7]vs3.9[3.8-4.0])。VTE患者的癌症风险最高的是胰腺癌(女性:19.6[15.8-24.4];男性:17.2[13.7-21.6])和脑癌(女性:17.4[12.9-23.4];男性:17.5[13.8-22.2])。VTE与膀胱/尿路上皮癌之间存在弱关联(女性:1.31[1.12-1.53];男性:1.34[1.23-1.47]),前列腺癌(男性:2.17[2.07-2.27]),恶性黑色素瘤(女性:2.51[2.07-3.05];男性:2.67[2.23-3.18]),和肾癌(女性:3.20[2.49-4.11];男性:3.33[2.79-4.07])。总之,膀胱/尿路上皮癌和肾癌与VTE的相关性较弱,胰腺强壮,大脑,和胆道癌。
    Cancer is a risk factor for venous thromboembolism (VTE). We aimed to define sex-specific risk of preceding cancer in patients with a first-time VTE by conducting a nationwide Swedish registry-based study including 298 172 patients with VTE and 1 185 079 matched controls. This included 44 685 patients with a diagnosis of cancer at/or within 1 year before a VTE diagnosis. Female patients with VTE had a higher multivariable adjusted odds ratios of preceding cancer than male patients with VTE (5.5 [99% confidence interval 5.4-5.7] vs 3.9 [3.8-4.0]). The highest risk of cancer in patients with VTE were found for pancreatic cancer (women: 19.6 [15.8-24.4]; men: 17.2 [13.7-21.6]) and brain cancer (women: 17.4 [12.9-23.4]; men: 17.5 [13.8-22.2]). Weak associations were seen between VTE and bladder/urothelial cancer (women: 1.31 [1.12-1.53]; men: 1.34 [1.23-1.47]), prostate cancer (men: 2.17 [2.07-2.27]), malignant melanoma (women: 2.51 [2.07-3.05]; men: 2.67 [2.23-3.18]), and kidney cancer (women: 3.20 [2.49-4.11]; men: 3.33 [2.79-4.07]). In conclusion, associations with VTE were weak for bladder/urothelial cancer and kidney cancer, and strong for pancreatic, brain, and biliary cancers.
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  • 文章类型: Journal Article
    背景:建立了国家波斯学龄双胞胎注册表,为双胞胎研究提供了平台。在这份报告中,我们描述了定义注册表特征,数据库设计,以及有关注册程序第一阶段收集的数据的初步结果。
    方法:通过焦点小组讨论,定义了设计数据库和数据收集过程所需的数据元素。首先,从教育部的电子数据库中检索了学龄儿童中的双胞胎名单。德黑兰学校被选为我们注册的第一阶段。除了人口统计信息外,父母还填写了标准的“豆豆”问卷和双胞胎相似问卷。数据采用SPSSv.22进行分析。
    结果:第一个全国学龄儿童双胞胎登记处于2018年建立。首先,使用焦点小组讨论定义了所需的数据集和数据收集过程.在国家一级,从教育部的国家数据库中检索了189,738名学生的初始信息。他们出生于2003年至2017年之间,其中男孩94,997(50.1%)和女孩94,741(49.9%)。其中,共有5,642对学龄儿童参加了我们计划的第一阶段。我们的样本量包括9772对双胞胎,906三倍,和92个四胞胎。对接合性问卷的分析表明,有14%的双胞胎被鉴定为单卵双胞胎。
    结论:通过学校卫生助理招募学龄双胞胎会导致高入学率和降低双胞胎注册成本。该研究表明,二卵双胞胎的比例很高,需要在下一阶段的研究中通过双胞胎生物样本进行验证。
    National Persian school-aged twin registry was established to provide a platform for twin studies. In this report, we describe defining registry characteristics, database design, and preliminary results regarding gathered data in the first phase of the registry program.
    Through focus group discussions, the required data elements to design the database and data collection process were defined. First, a list of twins in school-aged groups was retrieved from the electronic database of the Ministry of Education. Tehran schools were selected for the first phase of our registry. Standard \"Pea-in-Pods\" questionnaire and twins\' similarity questionnaires were filled out by the parents themselves in addition to demographic information. Data were analyzed using SPSS v.22.
    The first national school-aged twin registry was established in 2018. Firstly, the required data sets and data collection process were defined using focus group discussions. At the country level, the initial information on 189,738 students was retrieved from the national database of the Ministry of Education. They were born between 2003 and 2017, of which 94,997 are boys (50.1%) and 94,741 are girls (49.9%). Of them, a total of 5,642 pairs of school-aged twins participated in the first phase of our program. Our sample size comprised 9772 twins, 906 triples, and 92 quadruplets. The analysis of the zygosity questionnaire showed that 14% of twin pairs were identified as monozygotic twins.
    Recruiting school-aged twins through school health assistants leads to high enrollment and decreasing costs for the twin registry. The study showed a high rate of dizygotic twins that need to be verified by twin bio-sample in the next phase of studies.
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  • 文章类型: Journal Article
    目标:评估以下因素的影响:1)更新现有算法以提高病例发现的敏感性,以及2)将注册中心的诊断状态命名法重新分类为四个新类别(“确认的ALS,\"\"可能是ALS,\"\"未确定的ALS,\"或\"非ALS\")与当前三个(\"确定ALS,\"\"可能的ALS,\"或\"非ALS\")对病例和个人更具包容性和描述性。方法:对2011-2017年的注册数据进行回顾性分析,以追踪“可能的ALS”个体,以确定是什么限定符导致他们转换,如果有的话,什么时候,符合登记处资格的病例(即\“确认ALS\”或\“可能ALS\”)。结果:2011年,通过注册表算法将720名个体分类为“可能的ALS”。到2017年,其中42%已转化为符合注册条件的ALS病例。仅根据ALS处方药确定的患者中,约有14%从未转化为符合注册条件的病例。该分析表明,使用单一ALS药物处方的“可能的ALS”个人应转换为符合注册条件的病例,平均每年增加300-500例。结论:注册表的现有算法可能导致ALS病例的确定不足。然而,更新算法,包括已处方ALS特异性药物的患者,即使只有一个处方,改善了美国ALS的流行病学估计。这个和未来的算法更新将有助于注册表更准确地描述美国ALS的真实疾病负担。
    To evaluate the impact of 1) updating the existing algorithm to improve case-finding sensitivity and 2) reclassifying the Registry\'s diagnostic status nomenclature into four new categories (\"confirmed ALS,\" \"likely ALS,\" \"undetermined ALS,\" or \"not ALS\") versus the current three (\"definite ALS,\" \"possible ALS,\" or \"not ALS\") to be more inclusive and descriptive of cases and individuals.
    A retrospective analysis of Registry data from 2011-2017 was conducted to follow \"possible ALS\" individuals over time to determine what qualifier caused them to convert, if at all and when, to Registry-eligible cases (i.e. \"confirmed ALS\" or \"likely ALS\").
    In 2011, 720 individuals were classified by the Registry algorithm as having \"possible ALS\". By 2017, 42% of these had converted to Registry-eligible ALS cases. Approximately 14% of those who were identified solely based on an ALS prescription drug never converted to Registry-eligible cases. This analysis indicates that \"possible ALS\" individuals with a single prescription for an ALS drug should be converted to Registry-eligible cases which would add between 300-500 cases per year on average.
    The Registry\'s existing algorithm likely results in the under-ascertainment of ALS cases. However, updating the algorithm with the inclusion of patients having been prescribed ALS-specific drugs, even with a single prescription, leads to improved epidemiologic estimates of ALS in the US. This and future algorithmic updates will help the Registry more accurately depict the true disease burden of ALS in the US.
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  • 文章类型: Journal Article
    未经证实:有关中东心力衰竭(HF)患者的文献,除了一些现有的登记册,是稀缺的。我们报告,在我们国家第一次,基于医院的收缩期HF登记。
    UNASSIGNED:这是一个基于Web的HF注册,在法萨医科大学附属Vali-Asr医院进行,法萨,伊朗。该注册的目的是确定收缩期HF住院患者的总体基线临床特征和自然史。为了评估当前的管理模式和实践指南的实施,并确定遗传易感性环境影响之间的相关性,个体的健康特征,生活方式,发病率,和死亡率与药物的影响。
    未经批准:迄今为止,已登记2378名平均年龄为67.08±13.07岁的个体。其中,1381例(58.07%)患者被诊断为DenovoHF。大部分患者(60.1%)为男性,8.9%的人在过去30天内入院。HF的最常见原因是缺血性心脏病(86.5%)和高血压(5.3%)。大多数患者的NYHA一级(44.3%)和三级(20.4%)。总的来说,近30%患有糖尿病,38%以上患有高脂血症.大多数人没有吸烟史(68.7%)或吸烟烟斗(96.9%)。此外,22.2%是目前的鸦片使用者,3.2%是以前的鸦片使用者。
    UNASSIGNED:这项注册研究的发现可以将HF视为一种具有负担的慢性疾病。因此,政策制定者可以设计计划和指南来预防疾病,提高生存率和生活质量。
    UNASSIGNED: The literature on patients with heart failure (HF) from the Middle East, besides a few existing registries, is scarce. We report, for the first time in our country, a hospital-based registry for systolic HF.
    UNASSIGNED: This was a web-based registry on HF, conducted in Vali-Asr Hospital affiliated with Fasa University of Medical Sciences, Fasa, Iran. The goal of this registry was to define overall baseline clinical characteristics and natural history of hospitalized patients with systolic HF, to evaluate current management schema and implementation of practice guidelines, and to determine the correlation between genetic predisposition environmental effects, individuals\' characteristics of health, lifestyle, morbidity, and mortality in relation with the effects of medication.
    UNASSIGNED: To date, 2378 individuals with a mean of age 67.08±13.07 years have been registered. Among which, 1381 (58.07%) patients were diagnosed with denovo HF. Most of the patients (60.1%) were male, and 8.9% had admissions during the past 30 days. The most common causes of HF were ischemic heart disease (86.5%) and hypertension (5.3%). Most patients had NYHA class one (44.3%) and three (20.4%). Overall, near 30% had diabetes and more than 38% had hyperlipidemia. Most individuals have been not a history of cigarette smoking (68.7%) or water-pipe smoking (96.9%). Also, 22.2% were current opium users, and 3.2% were previous opium users.
    UNASSIGNED: The findings of this registry could make a realistic view of HF as a chronic disease with a burden. Therefore, policymakers can design programs and guidelines to prevent disease and better survival and quality of life.
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