The management of EoE remains complex, because it engages individual aspects of each patient and the healthcare resources available in each of the environments in which they are treated, the specific absence of specifically approved drugs for use in the EoE and the absence of solid data on the origin of the disorder, the factors that determine their prognosis, and personal and social costs. For all these reasons, EoE now represents a health and social challenge, committing a not negligible proportion of young patients, of complex management since it requires the collaboration of multiple specialists (gastroenterologists, allergists, pathological, nutritionists, etc.) for proper care. But simultaneously, EoE is an extraordinary opportunity for research in the field of immuno-allergic diseases based on its continuing expansion in neighboring countries. Although the etiology of EoE is unknown, epidemiological and recent reliminary genetic results indicate that EoE, like other diseases with an immunoallergic base, appears as a result of the action of environmental factors on genetically predisposed individuals. Environmental factors that influence the onset and course of the disease are very little known at the present, and their identification could pose the future development of preventive strategies. Genetic factors play an important role in the pathogenesis of the immune system diseases. Several observations supporting its role in EoE are derived from the stark differences in the incidence according to gender (up to 4 times more common in males) in different ethnic groups, frequent familial aggregation of EoE cases, a and greater concordance for EoE in monozygotic compared to dizygotic siblings. The characterization of genetic factors contributing to the EoE has not been developed due to the relative youth of the disease, but it certainly is one of the most important aspects to discover to understand the origin and evolution of this disease.

The overall objective of EoE CONNECT project is creating an infrastructure and the operating procedures required for the continued development of collaborative multicenter studies about the factors involved in the etiology, pathophysiology, therapy, and prognosis of EoE, including clinical, environmental, and epidemiological studies.

We currently have 50 active centers and more than 3,000 patients included. Here you can find a list with all participating centers.

EoE CONNECT - List of participating centers 31 OCT 2022.pdf

List of participating centers 31 OCT 2022

Publications

Differences between childhood- and adulthood-onset eosinophilic esophagitis: An analysis from the EoE connect registry.
EJ. Laserna-Mendieta et al. Dig Liver Dis. 2023;55(3):350-359.
https://www.sciencedirect.com

Accurate and timely diagnosis of Eosinophilic Esophagitis improves over time in Europe. An analysis of the EoE CONNECT Registry.
P. Navarro et al. United European Gastroenterol J. 2022;10(5):507-517.
https://pubmed.ncbi.nlm.nih.gov

EoE CONNECT, the European Registry of Clinical, Environmental, and Genetic Determinants in Eosinophilic Esophagitis: rationale, design, and study protocol of a large-scale epidemiological study in Europe.
AJ. Lucendo et al. Therap Adv Gastroenterol. 2022;15:17562848221074204.
https://pubmed.ncbi.nlm.nih.gov

Proton pump inhibitor therapy reverses endoscopic features of fibrosis in eosinophilic esophagitis.
P. Navarro et al. Dig Liver Dis. 2021; 53(11):1479-1485.
https://pubmed.ncbi.nlm.nih.gov

Efficacy of Therapy for Eosinophilic Esophagitis in Real-World Practice.
EJ. Laserna-Mendieta et al. Clin Gastroenterol Hepatol. 2020; 52(5):798-807
https://pubmed.ncbi.nlm.nih.gov

Efficacy of proton pump inhibitor therapy for eosinophilic oesophagitis in 630 patients: results from the EoE connect registry.
EJ. Laserna-Mendieta et al. Aliment Pharmacol Ther. 2020; 18(13):2903-2911.e4.
https://pubmed.ncbi.nlm.nih.gov

Studies in progress

• Utilization and real-world efficacy of swallowed topical corticosteroids for eosinophilic esophagitis: an analysis of data from the EoE connect registry

• Proton Pump Inhibitor therapy in Pediatric Eosinophilic Esophagitis. Determinant factors for Treatment Choice and Effectiveness: An Analysis of the EoE CONNECT registry

• Demographic, and Clinico-histological Characteristics and Early life Exposures of Sporadic cases versus Familial Eosinophilic Esophagitis. An analysis of the EoE CONNECT Registry

• Estudio de costes de la esofagitis eosinofílica en España durante el primer año tras el diagnóstico a partir de los datos del registro EoE CONNECT

Newsletters

June 2023

October 2022

February 2022

1. Promote studies on the influence of environmental factors in the course of EoE.
2. Promote studies to phenotypically characterize patients with EoE.
3. Promote studies and safety record of drug use in EoE.
4. Promote epidemiological studies related to EoE.
5. Promote studies on the consumption of health resources related to the care of EoE patients.
6. To disseminate scientific and technical knowledge through documentation and meetings of researchers.

The EoE Connect project has developed policies and operational protocols, and those for generating patient records, management and ownership of local files of participating health centers, transfer files with encoded data, and management and ownership of European files with the encoded data transferred, including:

1. Project management and scientific studies
2. Exploitation of recorded data
3. Process proposal and presentation of studies
4. Policy authorship of projects supported in the database Ha-EoE-EU.

The EoEconnect project accounts for its development with the approval of the Ethics Committee in Clinical Research of the La Princesa University Hospital (Madrid).