EoE CONNECT Registry
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. Despite EoE 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.
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.
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.
- 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.
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).
We currently have 50 active centers and more than 3,000 patients included. Here you can find a list with all participating centers:
Swallowed topical corticosteroids for eosinophilic esophagitis: Utilization and real-world efficacy from the EoE CONNECT registry.
EJ. Laserna-Mendieta et al. UEGJ. 2024 Jun;12(5):585-595.
Determinant factors for first-line treatment choice and effectiveness in pediatric eosinophilic esophagitis: an analysis of the EUREOS EoE Connect registry.
Eur J Pediatr. 2024 Aug;183(8):3567-3578.
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.
June 2022
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.
February 2022
Proton pump inhibitor therapy reverses endoscopic features of fibrosis in eosinophilic esophagitis.
P. Navarro et al. Dig Liver Dis. 2021; 53(11):1479-1485.
November 2021
Efficacy of Therapy for Eosinophilic Esophagitis in Real-World Practice.
EJ. Laserna-Mendieta et al. Clin Gastroenterol Hepatol. 2020; 52(5):798-807
December 2020
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.
September 2020
Studies in progress
- Sex-Related Differences in the Presentation, Management and Response to Treatment of Eosinophilic Esophagitis: SEXEoE Study of EoE CONNECT
- 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 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.
Download
- EoEconnect Participant Agreement I English (973.2 KiB)
- EoE Database Scientific Management rules (691.3 KiB)
- Patient information sheet and informed consent | Adults | English (124.8 KiB)
- Patient information sheet and informed consent | Adults | Spanish (142.0 KiB)
- Patient information sheet and informed consent | Children below 14 | English (287.4 KiB)
- Patient information sheet and informed consent | Children below 14 | Spanish (599.7 KiB)
Contact
Email: info.eureos@gmail.com
Email: ajlucendo@hotmail.com