Coronavirus and EoE/EGID Reporting Database

Welcome to SECURE-EoE/EGID!



Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-EoE/EGID) is an international, pediatric and adult database to monitor and report on outcomes of COVID-19 occurring in EoE/EGID patients. We encourage practitioners world-wide to report ALL confirmed cases (including asymptomatic cases identified through public health screening) and severe cases for whom COVID-19 has not been confirmed because of the lack of available testing (these will be listed as unconfirmed in the questionnaire). Reporting a case should take approximately 5 minutes. This case report form should be completed after the patient has had COVID-19 for a long enough duration to experience partial or complete recovery, hospitalization, or death.

With the collaboration of our entire EoE/EGID community, we will be able to define the impact of COVID-19 on patients with EoE/EGID, and how factors such as age, comorbidities, and treatments impact COVID outcomes.

Key points

  • This is an international effort – EoE/EGID are rare conditions and only with international cooperation will we be able to gather enough information.
  • This data collection contains only de-identified data in accordance with HIPAA Safe Harbor De-Identification standards.
  • The study has been approved by the Schneider Children’s Medical Center of Israel IRB.


To report a case of coronavirus, click here.

If you have any questions, please reach out to Noam Zevit

Sincerely,

Noam Zevit MD (Pediatric Gastroenterologist, Schneider Children’s Medical Center of Israel) Evan Dellon MD, MPH (Gastroenterologist, University of North Carolina at Chapel Hill) Mirna Chehade MD, MPH (Pediatric Gastroenterologist , Icahn School of Medicine at Mount Sinai, New York)

Our Partners


Our partners who have endorsed this project include the EGID working group the European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN), United European Gastroenterology (UEG), the Consortium for Eosinophilic Gastrointestinal Disease Researchers (CEGIR), the European Society of Eosinophilic Oesophagitis (EUREOS), and the North American Society for Pediatric Gastroenterology Hepatology and Nutrition (NASPGHAN).


We would also like to thank the following groups for their assistance in disseminating the survey, and the support of the following patient advocacy groups: EosNetwork, American Partnership for Eosinophilic Disorders (APFED), Campaign Urging Research for Eosinophilic Disease (CURED), the Eosinophilic Family Coalition (EFC), and the Israeli Eosinophilic Esophagitis Patient Advocacy Group (Lehedva)


  • American College of Gastroenterology (ACG)
  • Academy of Allergy, Asthma & Immunology (AAAAI)
  • Israeli Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ISPGHAN)
  • Latin American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (LASPGHAN)
  • British Society of Gastroenterology (BSG)
  • British Society for Pediatric Gastroenterology, Hepatology, and Nutrition (BSPGHAN)
  • Belgian Society for Pediatric Gastroenterology, Hepatology, and Nutrition (BeSPGHAN)


  • Protocol/CRF


    We are providing the following documents here: A copy of the protocol synopsis, a downloadable copy of our Case Report Form, and a copy of IRB approval.
    Study protocol
    Case Report Form PDF
    IRB approval

    Reporter acknowledgement


    Date last updated: 04/27/2020

    The SECURE-EoE/EGID Database would not be possible without the contribution of reporters worldwide. We truly appreciate the time health care providers have taken out of their busy schedules to report cases during this global crisis. We would like to acknowledge the following individuals who contributed Case Report Forms to the database.

    • Anita Modi
    • Constanza Ciriza de los Ríos
    • Gary Falk
    • Mirna Chehade
    • Kathryn Peterson
    • Emily McGowan

    Our Data


    Date last updated 07/07/2020

    General comments: We provide these summary data in the spirit of transparency and open data sharing. Given the relatively small number of reported cases and preliminary nature of these reports, we do not recommend these data be used to inform clinical decisions at this time. Additionally, as many mild cases of COVID-19 do not undergo testing, these data may over-represent more severe cases in which COVID-19 testing was performed. Please note that rows and columns from tables below may not add up to the exact number of total reported cases due to incomplete data and/or non-mutually exclusive variables.

    Please use the following citation if referencing the data on this page: Zevit N, Chehade M, Dellon ES. SECURE-EoE/EGID Database Public Data Update. covideoeegid.org. Accessed on MM/DD/YY.

    Total number of cases reported: 14

    Country N
    United States 11
    Spain 2
    United Kingdom 1


    Cases reported by state (U.S. only)*

    State N
    New York 4
    New Jersey 2
    Pennsylvania 2
    Utah 1
    Virginia 1
    Nevada 1

    *States not included on this table have not reported any cases to SECURE-EoE/EGID



    In light of the low volume of EoE/EGID cases at this time, data is currently presented on a case by case basis. We have also marked cases as pediatric/adult rather than having provided specific ages in order to maintain patient anonymity as per HIPAA requirements. The mean age was 25.6 years old.

    Adult/Pediatric EoE/EGID Type Disease Activity* Chronic Illness EoE/EGID Treatment Confirmed/Suspected Hospitalization ICU Ventilator Did EoE/EGID Flare
    Pediatric EoE Clinical Remission - Elimination Diet C - - - No
    Pediatric EoE Complete Remission Asthma Elimination Diet Topical oral Steroid PPI C - - - No
    Young Adult EoE/Enteritis Complete Remission ADHD Elimination Diet PPI S - - - No
    Adult EoE Complete Remission - Topical oral Steroid C - - - No
    Adult EoE Moderate Activity Asthma Topical oral Steroid PPI C - - - No
    Adult Eos Colitis Clinical Remission - Otilonium bromide C Yes No No No
    Adult EoE Clinical Remission Gastroperasis,GERD,Asthma Tropial oral Steroid PPI C - - - No
    Adult EoE Mild Activity - PPI C - - - No
    Young Adult EoE Moderate Activity - PPI C - - - No
    Young Adult EoE Complete Remission IBS Elimination Diet PPI S - - - No
    Young Adult EoE Mild Activity Asthma Elimination Diet S - - - No
    Pediatric EoE Clinical Remission - PPI; Elimination Diet; Toppical Steroids; Anti-IL5 C - - - No
    Pediatric EoE Clinical Remission - Elimination Diet C - - - No
    Young Adult EoE Moderate Activity Asthma PPI C - - - No


    *Clinical remission indicates – histologically active disease at last assessment. # Pediatric defined as ≤18. Young Adult 19-30, Adult≥31

    • A single patient stopped Topical Steroid during infection.
    • No severe COVID-19 infections or Deaths have yet to be reported to SECURE-EoE/EGID.

    Other Registries

    FAQ


    What is the purpose of this registry?
    The goal of the registry is to monitor and report on outcomes of COVID-19 in pediatric and adult patients with EoE/EGID.

    How is the data from this registry going to be shared/disbursed?
    The data will be shared 1) directly on the website Global Covid Registry, 2) through listservs and social media, and 3) via scholarly publications. We plan to periodically update the website with reports including number of cases (and COVID outcomes) by country, number of cases by treatment, etc.

    What steps have been taken to ensure the security of the data?
    We have created a registry that contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards
    . The local ethics committee at Rabin Medical Center has provided IRB approval, and the Israeli Ministry of Health has determined that the study is exempt from additional formal ethics committee applications in the state. Data collection is being done on REDCap software. REDCap (Research Electronic Data Capture) is an internet platform developed by Vanderbilt University and researchers consortium specifically designed for clinical research. The software enables secured electronic data collection. It was developed based on the HIPAA data collection policy and passed security checks of Clalit Health Services whose IT staff continue to assess the security of the system. It is currently used by more than 3000 centers world wide serving more than 750,000 researchers for more than half a million projects. Data collection will be de-identified and secured. Access is by individual user id, and is restricted to the forms and/or functions that the user needs to have.

    When should I fill out a Case Report Form?
    If you have a patient with eosinophilic esophagitis (EoE) or an eosinophilic gastrointestinal disorder (EGID) and confirmed SARS-CoV-2 infection or if the patient is highly suspected of COVID-19 but not confirmed (in situations where SARS-CoV-2 testing is not readily available), please complete the form after the patient has had COIVD-19 for a long enough duration to experience partial or complete recovery, hospitalization, or death. If the patient’s clinical status changes after a form has been completed, please refer to subsequent question.

    Once a survey has been submitted, can it be re-accessed or edited at a later time? What if I have updated information about a case after submission?
    Once a survey has been submitted it can not be re-accessed or edited at a later time. However, if you have updated information or any changes since you have reported a case, please re-report the case and email nzevit@gmail.com to ask our team to remove the duplicate entry.

    Who should fill out the Case Report Form?
    Health care providers taking care of patients with IBD and documented or suspected COVID-19.

    Can patients fill out the Case Report Form?
    No, the Case Report Form is designed to be filled out by a health care provider. Patients with EoE/EGID and documented/suspected COVID 19 should encourage their health care provider to complete a Case Report Form on their behalf.

    I am a patient. How can I help?
    Thank you for your interest in helping with this international effort! Please consider asking your health care provider to report on our website if you or any of their EoE/EGID patients contract COVID-19. We encourage you to check our website frequently, as we will be posting data and updates.

    I have a personal medical question about myself or my friend/family member. Can your team answer it for me?
    We are unable to answer personal medical questions. Currently, we do not have the data to determine how or if EoE/EGID medications or disease type change the risk associated with COVID 19. We recommend checking with your health care provider regarding any personal medical questions. In addition, we recommend following the CDC recommendations regarding COVID-19, which can be found here.

    How long will it take to complete the survey?
    It will take approximately five minutes to complete the survey.

    Can your team accept biological specimens (including blood samples) from patients?
    We do not have the infrastructure to accept patient samples at this time. However, we may consider conducting studies with biological samples in the future, so please stay tuned for updates.

    Can health care providers anywhere in the world report a case to this registry?
    Yes. This is an international effort, and we encourage health care providers around the world to report to this registry.

    Will this registry lead to care recommendations or guideline development?
    Yes, we hope that this will produce sufficient data to inform care of EoE/EGID patients.

    Have you considered allowing reported of suspected cases in addition to confirmed cases?
    Yes, we recognize that testing may be scare at many locations, therefore we are accepting both confirmed and suspected cases. When we assess the data, we will be able to differentiate confirmed and suspected cases.

    Is there a collaborative goal with the users of the database?
    This is a collaborative, world-wide effort. With users reporting cases in real time, we hope to rapidly determine the impact of COVID-19 on patients with EoE/EGID and ascertain how medications, comorbidities, and demographic factors modulate their risk. As above, these data will be made available on our project website and frequently updated.

    What cases have been reported so far?
    Please see the Current Data tab on our website for updated reports, including number of cases (and COVID outcomes) by country, number of cases by treatment, etc.

    How often will you update the website with the most recent data?
    We plan to periodically update the site with reports including number of cases (and COVID outcomes) by country, number of cases by treatment, etc. The frequency of the updates will depend on how much new data is accumulated over time. Because EoE and EGID are rare conditions, it may take time to achieve meaningful results, however we will provide updates as we go along.

    Who is organizing this project?
    This project is being led by Noam Zevit MD (Pediatric Gastroenterologist, Schneider Children’s Medical Center of Israel), Evan Dellon MD, MPH (Gastroenterologist, University of North Carolina at Chapel Hill), and Mirna Chehade MD, MPH (Pediatric Gastroenterologist , Icahn School of Medicine at Mount Sinai, New York).

    Are there any partnering or supporting organizations/societies?
    Our partners who have endorse this project include:

    • EGID working group the European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN)
    • United European Gastroenterology (UEG)
    • Consortium for Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
    • European Society of Eosinophilic Oesophagitis (EUREOS)
    • North American Society for Pediatric Gastroenterology Hepatology and Nutrition (NASPGHAN)

    We also would like to thank the following groups for their assistance in disseminating the survey:
    • American College of Gastroenterology (ACG)
    • Academy of Allergy, Asthma & Immunology (AAAAI)
    • Israeli Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ISPGHAN)
    • Latin American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (LASPGHAN)
    • British Society of Gastroenterology (BSG)
    • British Society for Pediatric Gastroenterology, Hepatology, and Nutrition (BSPGHAN)
    • Belgian Society for Pediatric Gastroenterology, Hepatology, and Nutrition (BeSPGHAN)

    We also thank the support of the following patient advocacy groups:
    • EosNetwork
    • American Partnership for Eosinophilic Disorders (APFED)
    • Campaign Urging Research for Eosinophilic Disease (CURED)
    • Eosinophilic Family Coalition (EFC)
    • Israeli Eosinophilic Esophagitis Patient Advocacy Group (Lehedva)
    If I have additional questions, whom should I contact?
    Please direct questions to Noam Zevit