EoEconnect

European Registry of Clinical, Environmental and Genetic Determinants in Eosinophilic Esophagitis

Despite being characterized for the first time as a distinct clinicopathologic syndrome just 2 decades ago, EoE has been 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 of between 45 and 55 cases per 100,000 population, 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.

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

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

SPECIFIC GOALS
  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.

DEVELOPMENT OF PROJECTS FROM THE INFORMATION
RECORDED IN EoECONNECT DATABASE

The EoEconnect 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).

PARTICIPATING IN THIS PROJECT

At the right you will find the necessary documents in order to contribute to the record. If you are interested in joining to the EoEconnect project please take into account that your institution (represented through the person responsible) and your reference ethics committee must specifically approve the participation in the project.

After obtaining the permissions and submitting us the documents you will be registered and obtain access to the EoEconnect database via the following link.

Contract and commitment model

Must be signed by you as the site investigator, and the legal responsible of your institution, and also by the scientific responsible institution for the project.

EoEconnect_Participant_Agreement

Patient information sheet and informed consent model

Informed Consent Adults less14 years
English  EoEconnect_IC  EoEconnect_less14
Spanish  EoEconnect_CI  EoEconnect_14años
Italian
French