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Abstract：
UNASSIGNED: The Swiss Eosinophilic Esophagitis Cohort Study (SEECS) is a national cohort that was established in 2015 with the aim of improving quality of care of affected adults with eosinophilic esophagitis (EoE). Between 2020 and 2022, paper questionnaires were gradually replaced by fully electronic data capture using Research Electronic Data Capture (REDCap®) software. We aim to provide an update of the SEECS 8 years after its launch.
UNASSIGNED: The SEECS prospectively includes adults (≥18 years of age) with EoE as well as patients with gastroesophageal reflux disease (GERD) and healthy control subjects (HC). Upon inclusion and follow-up (typically once every 12-18 months), patients and physicians complete REDCap® questionnaires, which are available in German, French, and English. Patient-reported outcomes (PROs) and biologic findings are assessed on the same day using validated instruments (EEsAI PRO for symptoms; EoE-QoL-A for QoL; EREFS for endoscopic activity; modified EoE-HSS for histologic activity). The SEECS biobank includes biosamples from patients with EoE, GERD, and HC.
UNASSIGNED: As of July 2023, the SEECS included 778 patients (716 [92%] with EoE, 29 [3.8%] with GERD, and 33 [4.2%] HC; 559/778 [71.9%] were male). Mean age ± SD (years) at enrollment according to diagnosis was as follows: EoE 41.9 ± 12.9, GERD 53.6 ± 16.4, HC 51.7 ± 17.2. Concomitant GERD was found in 200 patients (27.9%) of the EoE cohort. Concomitant allergic disorders (asthma, rhinoconjunctivitis, eczema) were present in 500 EoE patients (74.4%). At inclusion, 686 (95.8%) of EoE patients were on ongoing treatment (orodispersible budesonide tablet [Jorveza®] in 281 patients [41%]; budesonide or fluticasone syrup or swallowed powder in 290 patients [42.3%]; proton-pump inhibitors in 162 patients [23.6%]; elimination diets in 103 patients [15%]; and esophageal dilation at last visit in 166 patients [24.2%]). A total of 8,698 biosamples were collected, of which 1,395 (16%) were used in the framework of translational research projects.
UNASSIGNED: SEECS continuously grows and is operational using fully electronic data capture. SEECS offers up-to-date epidemiologic and real-world clinical efficacy data on EoE and promotes clinical and translational research.
UNASSIGNED: The SEECS prospectively includes adults (≥18 years of age) with EoE as well as patients with gastroesophageal reflux disease (GERD) and healthy control subjects (HC). Upon inclusion and follow-up (typically once every 12-18 months), patients and physicians complete REDCap® questionnaires, which are available in German, French, and English. Patient-reported outcomes (PROs) and biologic findings are assessed on the same day using validated instruments (EEsAI PRO for symptoms; EoE-QoL-A for QoL; EREFS for endoscopic activity; modified EoE-HSS for histologic activity). The SEECS biobank includes biosamples from patients with EoE, GERD, and HC.
UNASSIGNED: As of July 2023, the SEECS included 778 patients (716 [92%] with EoE, 29 [3.8%] with GERD, and 33 [4.2%] HC; 559/778 [71.9%] were male). Mean age ± SD (years) at enrollment according to diagnosis was as follows: EoE 41.9 ± 12.9, GERD 53.6 ± 16.4, HC 51.7 ± 17.2. Concomitant GERD was found in 200 patients (27.9%) of the EoE cohort. Concomitant allergic disorders (asthma, rhinoconjunctivitis, eczema) were present in 500 EoE patients (74.4%). At inclusion, 686 (95.8%) of EoE patients were on ongoing treatment (orodispersible budesonide tablet [Jorveza®] in 281 patients [41%]; budesonide or fluticasone syrup or swallowed powder in 290 patients [42.3%]; proton-pump inhibitors in 162 patients [23.6%]; elimination diets in 103 patients [15%]; and esophageal dilation at last visit in 166 patients [24.2%]). A total of 8,698 biosamples were collected, of which 1,395 (16%) were used in the framework of translational research projects.
UNASSIGNED: SEECS continuously grows and is operational using fully electronic data capture. SEECS offers up-to-date epidemiologic and real-world clinical efficacy data on EoE and promotes clinical and translational research.
摘要：
■瑞士嗜酸性食管炎队列研究(SEECS)是一项全国性队列研究，成立于2015年，旨在提高嗜酸性食管炎(EoE)患者的护理质量。在2020年至2022年之间，纸质问卷逐渐被使用研究电子数据捕获（REDCap®）软件的完全电子数据捕获所取代。我们的目标是在SEECS推出8年后提供更新。
■SEECS前瞻性包括患有EoE的成年人（≥18岁）以及患有胃食管反流病（GERD）的患者和健康对照组（HC）。纳入和随访（通常每12-18个月一次），患者和医生填写REDCap®问卷，有德语版本，法语,和英语。使用经过验证的仪器（EEsAIPRO用于症状；EoE-QoL-A用于QoL；EREFS用于内窥镜活动；改良的EoE-HSS用于组织学活动）在同一天评估患者报告的结果（PRO）和生物学发现。SEECS生物样本库包括EoE患者的生物样本，GERD,HC。
■截至2023年7月，SEECS包括778名患者（716[92％]患有EoE，29[3.8%]患有GERD，33[4.2%]HC；559/778[71.9%]为男性）。根据诊断，入组时的平均年龄±SD（年）如下：EoE41.9±12.9，GERD53.6±16.4，HC51.7±17.2。在EoE队列的200名患者（27.9％）中发现了合并GERD。伴随过敏性疾病（哮喘，鼻结膜炎,湿疹）存在于500例EoE患者中（74.4%）。在纳入时，686例（95.8％）EoE患者正在接受持续治疗（281例患者[41％]的口腔分散布地奈德片[Jorveza®]；290例患者[42.3％]的布地奈德或氟替卡松糖浆或吞咽粉剂；162例患者[23.6％]的质子泵抑制剂；103例患者消除饮食[15％]；最后一次就诊166例患者食管扩张[24.2％]。总共收集了8,698个生物样本，其中1395个(16%)用于转化研究项目的框架。
■SEECS不断增长，并使用全电子数据采集进行操作。SEECS提供有关EoE的最新流行病学和现实世界临床疗效数据，并促进临床和转化研究。
■SEECS前瞻性包括患有EoE的成年人（≥18岁）以及患有胃食管反流病（GERD）的患者和健康对照组（HC）。纳入和随访（通常每12-18个月一次），患者和医生填写REDCap®问卷，有德语版本，法语,和英语。使用经过验证的仪器（EEsAIPRO用于症状；EoE-QoL-A用于QoL；EREFS用于内窥镜活动；改良的EoE-HSS用于组织学活动）在同一天评估患者报告的结果（PRO）和生物学发现。SEECS生物样本库包括EoE患者的生物样本，GERD,HC。
■截至2023年7月，SEECS包括778名患者（716[92％]患有EoE，29[3.8%]患有GERD，33[4.2%]HC；559/778[71.9%]为男性）。根据诊断，入组时的平均年龄±SD（年）如下：EoE41.9±12.9，GERD53.6±16.4，HC51.7±17.2。在EoE队列的200名患者（27.9％）中发现了合并GERD。伴随过敏性疾病（哮喘，鼻结膜炎,湿疹）存在于500例EoE患者中（74.4%）。在纳入时，686例（95.8％）EoE患者正在接受持续治疗（281例患者[41％]的口腔分散布地奈德片[Jorveza®]；290例患者[42.3％]的布地奈德或氟替卡松糖浆或吞咽粉剂；162例患者[23.6％]的质子泵抑制剂；103例患者消除饮食[15％]；最后一次就诊166例患者食管扩张[24.2％]。总共收集了8,698个生物样本，其中1395个(16%)用于转化研究项目的框架。
■SEECS不断增长，并使用全电子数据采集进行操作。SEECS提供有关EoE的最新流行病学和现实世界临床疗效数据，并促进临床和转化研究。
