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About EoE CONNECT
EoE CONNECT is a multi-center, international, observational, prospectively maintained registry of pediatric and adult patients diagnosed with EoE and cared for at participating study sites around Europe. It was initiated in 2016 with a grant from UEG and is currently managed by EUREOS.
About EoE
Despite being characterized for the first time as a distinct clinicopathologic syndrome just 3 decades ago, EoE is recognized now as the most common cause of chronic or recurrent symptoms after esophageal reflux disease (GERD), and the main cause of dysphagia in children and young adults in European countries and North America, with a prevalence that exceeds 100 cases per 100,000 inhabitants, according to several studies. In recent years it has also emerged as a disorder of increasing frequency in other regions, and as a result, EoE now represents a growing chronic common health problem, which implies a significant deterioration in quality of life of patients, while representing a significant burden on health care systems.
Although the etiology of EoE is unknown, epidemiological and recent preliminary genetic results indicate that EoE, like other diseases with an immunoallergic basis, 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. Moreover, genetic factors contributing to EoE has been limitedly characterized 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.Management of EoE
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.
General Goal of EoE CONNECT
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.
Thus, the key element of this project is the creation of a large database of patients diagnosed with EoE, including several variables on different aspects of the disease, which can be used locally, as a patient registry, or for a subsequent common exploitation for scientific purposes. Moreover, patients with other esophageal conditions or controls with healthy esophagus will be added to complement this registry, and a biobank will be implemented to collect blood and tissue samples from patients at different stages along the disease’s course.EOE CONNECT Centers
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
EoE CONNECT Publications
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
EoE CONNECT Newsletters
Specific Goals
- Promote studies on the influence of environmental factors in the course of EoE.
- Promote studies to phenotypically characterize patients with EoE.
- Promote studies and safety record of drug use in EoE.
- Promote epidemiological studies related to EoE.
- Promote studies on the consumption of health resources related to the care of EoE patients.
- To disseminate scientific and technical knowledge through documentation and meetings of researchers.
Development of Projects from the Information recorded in EoE CONNECT Database
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:
- Project management and scientific studies
- Exploitation of recorded data
- Process proposal and presentation of studies
- 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).
Join this project
EoE Connect is a growing project, with more and more collaborating centers, which provides support for increasing number of studies. If you are interested in joining to the EoE Connect project, here you can find detailed information about the registry.
Please take into account that your institution (represented through the responsible person) and your reference ethics committee must specifically approve the participation in the project.
After obtaining the permissions from your Ethics Committee and submitting us the documents you will be registered and obtain access to the EoE CONNECT database.
EoE Connect – Protocol
https://journals.sagepub.com
Contact
Email: info.eureos@gmail.com
Email: ajlucendo@hotmail.com
EoE Research Centers
Below you will find the member directory of the EoE Research Centers.
Member directory
Netherlands
Amsterdam University Medical Centres
Prof. PhD Arjan Bredenoord
Spain
Hospital General de Tomelloso
MD, PhD Alfredo Lucendo
Switzerland
Bariatric Surgery Study - Joint EUREOS and TIGERs Call
With the obesity epidemic increasingly affecting EoE patients, questions arise whether or not bariatric surgery can be performed in our patient population. However, there are currently no data regarding the safety of this type of surgery in EoE patients nor regarding post-surgical disease course of EoE. Aim of the study: With this retrospective study on Bariatric Surgery in Patients with Eosinophilic Esophagitis, we seek to answer the following research questions:- What are patient and disease characteristics of EoE patients undergoing bariatric surgery?
- What is the disease-related outcome of patients with EoE undergoing bariatric surgery?
- How is the procedural outcome of bariatric surgery affected by the presence and the activity of EoE at the timepoint of surgery? As cases from one single institution or country would not be sufficient in number, we hereby reach out to the EoE community for a joint TIGERs and EUREOS call for reporting EoE cases undergoing bariatric surgery. All contributing investigators will be acknowledged as co-authors. The detailed study protocol and the standardized data-reporting sheet are found here. Please report your cases by sending an email to thomas.greuter@gzo.ch. Deadline for reporting similar cases: January 31, 2024