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7807: Validation of Online Cohort of Eosinophilic Gastrointestinal Disorder (EGID) Patients Enrolled in RDCRN CEGIR Contact Registry

Status: RECRUITING

The purpose of this study is to determine the accuracy of self-reported Eosinophilic Gastrointestinal Disorders (EGID) information provided by Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Contact Registry (CR) participants compared to their physician’s report. Another purpose of this study is to determine the agreement between pathology report confirming EGID diagnosis and both physician and patient report.

For Diseases

  • Eosinophilic Esophagitis (EoE)
  • Eosinophilic Gastritis (EG)
  • Eosinophilic Gastroenteritis (EGE)
  • Eosinophilic Colitis (EC)

Background

EGIDs are rare disorders characterized by elevated white blood cells (called eosinophils) in the gastrointestinal tract. The 4 types of EGIDS are: EoE, EG, EGE and EC. Patients with EGIDs can join the CEGIR CR where they provide information about their disorder/s. The purpose of this study is to see if the CR participants’ reported disease information matches with the information reported by their physicians.

The research questions are:

  1. Do the CR participants’ self-reported EGID information match their physicians’ reports?
  2. Do the EGID diagnostic pathology reports match both the physician and patient reports?

This is a cross sectional survey study involving CEGIR CR participants and their physicians.  As of August 16, 2018, there were 1,448 patients in the CEGIR CR.  The number of CR participants that are involved in this study will be dependent upon the number that are enrolled in the CR on the study start date.  On the study start date, the Data Management and Coordinating Center (DMCC) will send Contact Registrants an introduction email that contains a link to the consent form.  If the Contact Registrant provides consent to both participate in the study and for the DMCC to contact their physician, and provides their physician’s contact information, the individual will be directed to complete an online survey, and their physician will be sent an introductory email with a survey link. 

The study participant will answer questions on demographics, disease type and activity, medications, medical history and treatment/therapies.  The physician will provide relevant information as documented in the patient’s clinical records.  Physicians will also be requested to upload their patient’s pathology reports as part of the survey.

Both Contact Registrants and physicians will receive up to 4 e-mails total (1 invitation email and 3 follow-up/reminder e-mails).  After 4 e-mails have been sent, the individual will not be contacted about the study again.  Both Contact Registrants and physicians will have the option to opt out and to stop being contacted about the study.

Targeted Enrollment

To be eligible to participate, you must:

  • Have a diagnosis of EGID (EoE, EG, EGE, and/or EC)
  • Be enrolled in the CEGIR Contact Registry
  • Be any age. A parent or guardian of children < 18 years of age will respond to the questionnaire on behalf of their child.
  • Be any gender
  • Have Internet access

You are not eligible to participate if:

  • You are unable to provide informed consent and complete the survey.
You can join if you are a member of the CEGIR Contact Registry and meet the above Inclusion/Exclusion Criteria.
If you have any questions about this study or how to join, please contact:

Florida

University of South Florida, Tampa
Study Coordinator: Kimberly Bray, MPH, CPH
Phone: 813-396-9719
Email: Kimberly.Bray@epi.usf.edu


Learn about all the benefits of joining the RDCRN Contact Registry.

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Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.