El-Khoury Jeanine Wakim, Safroneeva Ekaterina, Saner Catherine, Rossel Jean-Benoit, Trelle Sven, Zwahlen Marcel, Biedermann Luc, Kreienbuehl Andrea, Greuter Thomas, Schreiner Philipp, Netzer Peter, Franke Annett, Brand Stephan, Hasler Chantal, Aepli Patrick, Burri Emanuel, Weber Achim, Sempoux Christine, Biral Ruggero, Jochum Wolfram, Diebold Joachim, Willi Niels, Straumann Alex, Schoepfer Alain M
Division of Gastroenterology and Hepatology, Centre Hospitalier Universitaire Vaudois (CHUV) and University of Lausanne, Lausanne, Switzerland.
Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Inflamm Intest Dis. 2024 Jul 17;9(1):165-173. doi: 10.1159/000539713. eCollection 2024 Jan-Dec.
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.
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.
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.
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.
瑞士嗜酸性食管炎队列研究（SEECS）是一个国家级队列研究，于2015年设立，旨在提高成年嗜酸性食管炎（EoE）患者的护理质量。在2020年至2022年期间，纸质问卷逐渐被使用研究电子数据采集（REDCap）软件的全电子数据采集所取代。我们旨在提供SEECS启动8年后的最新情况。
SEECS前瞻性纳入成年EoE患者（≥18岁）以及胃食管反流病（GERD）患者和健康对照者（HC）。在纳入和随访时（通常每12 - 18个月一次），患者和医生完成REDCap问卷，问卷有德语、法语和英语版本。使用经过验证的工具在同一天评估患者报告的结局（PROs）和生物学发现（EEsAI PRO用于症状；EoE - QoL - A用于生活质量；EREFS用于内镜活动；改良的EoE - HSS用于组织学活动）。SEECS生物样本库包括来自EoE、GERD患者和HC的生物样本。
截至2023年7月，SEECS纳入了778名患者（716名[92%]为EoE患者，29名[3.8%]为GERD患者，33名[4.2%]为HC；559/778[71.9%]为男性）。根据诊断，入组时的平均年龄±标准差（岁）如下：EoE为41.9±12.9，GERD为53.6±16.4，HC为51.7±17.2。在EoE队列的200名患者（27.9%）中发现了合并GERD。500名EoE患者（74.4%）存在合并过敏性疾病（哮喘、鼻结膜炎、湿疹）。纳入时，686名（95.8%）EoE患者正在接受治疗（281名患者[41%]使用可分散布地奈德片[Jorveza]；290名患者[42.3%]使用布地奈德或氟替卡松糖浆或吞咽粉剂；162名患者[23.6%]使用质子泵抑制剂；103名患者[15%]采用排除饮食；166名患者[24.2%]在最后一次就诊时进行了食管扩张）。共收集了8698份生物样本，其中1395份（16%）用于转化研究项目框架内。
SEECS持续发展，并使用全电子数据采集进行运作。SEECS提供了关于EoE的最新流行病学和真实世界临床疗效数据，并促进了临床和转化研究。
