Introduction
The Swiss Eosinophilic Esophagitis Cohort Study (SEECS) is a national prospective cohort for adults with eosinophilic esophagitis (EoE) that was established in 2015 with the aim of improving quality of care considering EoE’s increased incidence. The SEECS allows for documentation of EoE’s natural history, patients’ quality of life (QoL) and monitoring of treatment efficacy and safety. It also aims to promote clinical and translational research projects with the availability of standard operating procedures (SOPs) for the submission of scientific protocols. The first cohort update was published in 2017. 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 a second update of the cohort, eight years after its launch.
Aims & Methods
The SEECS includes adult patients (age ≥18 years) with EoE, gastro-esophageal reflux (GERD) and healthy controls (HC) using strict eligibility criteria in line with the most recent guidelines. Upon inclusion and follow-up (typically once a year), patients and physicians complete questionnaires in REDCap which are available in German, French, and English. Patients reported outcomes (PROs) and biologic activity are assessed all 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 (blood samples, esophageal biopsies) from patients with EoE, GERD, and HC.
Results
As of July 2023, the SEECS includes 778 patients [716 (92%) with EoE, 29 (3.8%) with GERD, and 33 (4.2%) HC; 559/778 (71.9%) are male]. Mean age±SD (years) according to diagnosis is as follows: EoE 41.9±12.9, GERD 53.6±16.4, HC 51.7±17.2. Mean diagnostic delay for the EoE group is 89.6±96.2 months. Concomitant GERD is found in 200 patients (27.9%) of the EoE cohort. Concomitant allergic disorders (asthma, rhinoconjunctivitis, neurodermitis) are present in 500 patients (74.4%) with EoE. At inclusion, 694 (96.9%) of EoE patients have an ongoing treatment [orodispersible budesonide tablet: 290 patients (41.8%); budesonide/fluticasone syrup: 281 patients (40.5%); PPI: 162 patients (23.3%); elimination diets: 103 patients (14.8%); esophageal dilation at last visit: 166 patients (23.9%)]. Esophageal biopsies are available from 525/778 (67.5%) patients including 468 EoE patients (65.4%).
Conclusion
Our findings are in line with the available literature on EoE’s natural history. To our knowledge, the SEECS is the only national cohort for EoE adult patients that includes both GERD and healthy controls with their biosamples. Data capture is based on validated instruments and is fully electronic using REDCap. The SEECS offers up-to-date epidemiologic data on EoE and promotes research projects.
Disclosure
Jeanine Wakim has no relevant financial, professional, or personal relationships to disclose. Ekaterina Safroneeva reports (i) consulting fees from Avir Pharma, Inc., Aptalis Pharma, Inc., Celgene Corp., Novartis, AG, and Regeneron Pharmaceuticals Inc; (ii) being an employee of Tillotts Pharma AG. Catherine Saner has no relevant financial, professional, or personal relationships to disclose. Jean-Benoit Rossel has no relevant financial, professional, or personal relationships to disclose. Sven Trelle has no relevant financial, professional, or personal relationships to disclose. Marcel Zwahlen has no relevant financial, professional, or personal relationships to disclose. Luc Biedermann received consulting fees and/or speaker fees and/or research grants from Adare/Ellodi Pharmaceuticals, Inc., AstraZeneca, AG, Switzerland, Receptos-Celgene-BMS, Dr. Falk Pharma, GmbH, Germany, Glaxo Smith Kline, AG, Nestlé S. A., Switzerland, Novartis, AG, Switzerland, and Regeneron-Sanofi Pharmaceuticals. Andrea Kreienbuehl has no relevant financial, professional, or personal relationships to disclose. Thomas Greuter received consulting fees and/or speaker fees and/or research grants from Adare/Ellodi Pharmaceuticals, Inc., AstraZeneca, AG, Switzerland, Receptos-Celgene-BMS, Dr. Falk Pharma, GmbH, Germany, Glaxo Smith Kline, AG, Nestlé S. A., Switzerland, Novartis, AG, Switzerland, and Regeneron-Sanofi Pharmaceuticals. Philipp Schreiner received consulting fees and/or speaker fees from Dr. Falk Pharma, GmbH, Takeda, Regerenon-Sanofi Pharmaceuticals, Abbvie, Janssen-Cilag, Receptos-Celgene-BMS. Peter Netzer has no relevant financial, professional, or personal relationships to disclose. Annett Franke has no relevant financial, professional, or personal relationships to disclose. Stephan Brand has no relevant financial, professional, or personal relationships to disclose. Chantal Hasler has no relevant financial, professional, or personal relationships to disclose. Patrick Aepli has no relevant financial, professional, or personal relationships to disclose. Emanuel Burri has no relevant financial, professional, or personal relationships to disclose. Achim Weber has no relevant financial, professional, or personal relationships to disclose. Christine Sempoux has no relevant financial, professional, or personal relationships to disclose. Ruggero Biral has no relevant financial, professional, or personal relationships to disclose. Wolfram Jochum has no relevant financial, professional, or personal relationships to disclose. Joachim Diebold has no relevant financial, professional, or personal relationships to disclose. Niels Willi has no relevant financial, professional, or personal relationships to disclose. Alex Straumann received consulting fees and/or speaker fees and/or research grants from Adare/Ellodi Pharmaceuticals, Inc., AstraZeneca, AG, Switzerland, Receptos-Celgene-BMS, Dr. Falk Pharma, GmbH, Germany, Glaxo Smith Kline, AG, Nestlé S. A., Switzerland, Novartis, AG, Switzerland, and Regeneron-Sanofi Pharmaceuticals. Alain Schoepfer received consulting fees and/or speaker fees and/or research grants from Adare/Ellodi Pharmaceuticals, Inc., AstraZeneca, AG, Switzerland, Receptos-Celgene-BMS, Dr. Falk Pharma, GmbH, Germany, Glaxo Smith Kline, AG, Nestlé S. A., Switzerland, Novartis, AG, Switzerland, and Regeneron-Sanofi Pharmaceuticals.