Cohort Profile Update: The Swiss Eosinophilic Esophagitis Cohort Study (SEECS)

Jeanine Wakim El-Khoury; Ekaterina Safroneeva; Catherine Saner; Jean-Benoit Rossel; Sven Trelle; Marcel Zwahlen; Luc Biedermann; Andrea Kreienbuehl; Thomas Greuter; Philipp Schreiner; Peter Netzer; Annett Franke; Stephan Brand; Chantal Hasler; Patrick Aepli; Emanuel Burri; Achim Weber; Christine Sempoux; Ruggero Biral; Wolfram Jochum; Joachim Diebold; Niels Willi; Alex Straumann; Alain M Schoepfer; Swiss EoE Cohort Study Group

doi:10.1159/000539713

Cohort Profile Update: The Swiss Eosinophilic Esophagitis Cohort Study (SEECS)

Inflamm Intest Dis. 2024 Jul 17;9(1):165-173. doi: 10.1159/000539713. eCollection 2024 Jan-Dec.

Authors

Jeanine Wakim El-Khoury¹, Ekaterina Safroneeva², Catherine Saner¹, Jean-Benoit Rossel³, Sven Trelle³, Marcel Zwahlen², Luc Biedermann⁴, Andrea Kreienbuehl⁴, Thomas Greuter^{4

5}, Philipp Schreiner⁶, Peter Netzer⁷, Annett Franke⁸, Stephan Brand⁸, Chantal Hasler⁹, Patrick Aepli⁹, Emanuel Burri¹⁰, Achim Weber¹¹, Christine Sempoux¹², Ruggero Biral¹³, Wolfram Jochum¹⁴, Joachim Diebold¹⁵, Niels Willi¹⁶, Alex Straumann⁴, Alain M Schoepfer¹; Swiss EoE Cohort Study Group

Affiliations

¹ Division of Gastroenterology and Hepatology, Centre Hospitalier Universitaire Vaudois (CHUV) and University of Lausanne, Lausanne, Switzerland.
² Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
³ Department of Clinical Research, University of Bern, Bern, Switzerland.
⁴ Division of Gastroenterology and Hepatology, University Hospital Zurich, Zurich, Switzerland.
⁵ Division of Gastroenterology and Hepatology, Spital Wetzikon, Wetzikon, Switzerland.
⁶ Division of Gastroenterology and Hepatology, University Hospital AKH Vienna, Vienna, Austria.
⁷ GastroZentrum Netzer AG, Lindenhofspital, Bern, Switzerland.
⁸ Division of Gastroenterology and Hepatology, Kantonsspital St. Gallen, St. Gallen, Switzerland.
⁹ Division of Gastroenterology and Hepatology, Kantonsspital Lucerne, Lucerne, Switzerland.
¹⁰ Division of Gastroenterology and Hepatology, University Hospital Basel, Liestal, Switzerland.
¹¹ Division of Pathology, University Hospital Zurich, Zurich, Switzerland.
¹² Institute of Pathology, Centre Hospitalier Universitaire Vaudois (CHUV) and University of Lausanne, Lausanne, Switzerland.
¹³ Pathologie Länggasse, Bern, Switzerland.
¹⁴ Institute of Pathology, Kantonsspital St. Gallen, St. Gallen, Switzerland.
¹⁵ Division of Pathology, Kantonsspital Luzern, Luzern, Switzerland.
¹⁶ Division of Pathology, Kantonsspital Liestal, Liestal, Switzerland.

Abstract

Introduction: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords: Adults; Cohort; Eosinophilic esophagitis.

Grants and funding

Work supported by grants from the Swiss National Science Foundation (32003B_204751/1 to AMS), the Swiss EoE foundation (to AMS), BMS (to AMS), Dr. Falk Pharma (to AMS) and Sanofi-Regeneron (to AMS).