CEGIR 7807: Validation of Online Cohort of EGID Patients Enrolled in RDCRN CEGIR Contact Registry
| Status: | Enrolling by invitation |
|---|---|
| Conditions: | Gastrointestinal |
| Therapuetic Areas: | Gastroenterology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 9/26/2018 |
| Start Date: | September 4, 2018 |
| End Date: | January 1, 2020 |
The purpose of this study is to validate the online cohort of EGID patients enrolled in the
RDCRN CEGIR CR. In order to achieve this objective, the investigators will determine the
agreement between self-reported EGID information by the enrollees and their physician's
report and medical records. All participants enrolled in the RDCRN CEGIR CR with EGIDs will
be invited via email to participate in this study.
RDCRN CEGIR CR. In order to achieve this objective, the investigators will determine the
agreement between self-reported EGID information by the enrollees and their physician's
report and medical records. All participants enrolled in the RDCRN CEGIR CR with EGIDs will
be invited via email to participate in this study.
All individuals with EGID and enrolled in the RDCRN CEGIR CR, at the date of the start of the
study, will be invited to participate in this survey. As of 09/18, 1466 EGID patients have
enrolled in CEGIR CR [EoE=1,143, EG=54, EGE=60, EC=47; multiple diseases=162]
The survey will be conducted through a pre-designed questionnaire. The questionnaire will be
sent to participants via an introductory email wherein subjects will be informed about the
purpose of this study. The questionnaire will gather self-reported clinical information (such
as diagnosis, endoscopic procedures, histological findings in mucosal biopsies, and
therapeutic plan). Consent will be obtained from participants to contact their physicians and
allow their physicians to share relevant clinical information from their medical records.
Physicians identified by participants will be emailed a website link which will take them to
a questionnaire. This questionnaire is designed to gather relevant information as documented
in the patient's clinical records. Physicians will be able to submit the information online.
It is anticipated that responding to this questionnaire would take less than 10 minutes of
their time.
study, will be invited to participate in this survey. As of 09/18, 1466 EGID patients have
enrolled in CEGIR CR [EoE=1,143, EG=54, EGE=60, EC=47; multiple diseases=162]
The survey will be conducted through a pre-designed questionnaire. The questionnaire will be
sent to participants via an introductory email wherein subjects will be informed about the
purpose of this study. The questionnaire will gather self-reported clinical information (such
as diagnosis, endoscopic procedures, histological findings in mucosal biopsies, and
therapeutic plan). Consent will be obtained from participants to contact their physicians and
allow their physicians to share relevant clinical information from their medical records.
Physicians identified by participants will be emailed a website link which will take them to
a questionnaire. This questionnaire is designed to gather relevant information as documented
in the patient's clinical records. Physicians will be able to submit the information online.
It is anticipated that responding to this questionnaire would take less than 10 minutes of
their time.
Inclusion Criteria:
- Enrolled in the RDCRN CEGIR Contact Registry, and with Internet access.
Exclusion Criteria:
We found this trial at
1
site
3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229
Cincinnati, Ohio 45229
1-513-636-4200
Cincinnati Children's Hospital Medical Center Patients and families from across the region and around the...
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