Clinical Registry for Empty Nose Syndrome

 

You are invited to take part in this clinical registry for patients suffering from Empty Nose Syndrome (ENS). The goal of this clinical registry is support future clinical trials of current and future therapeutics to prevent ,cure, and treat ENS. Initial enrollment will be limited to the first 100 patients.  The Foundation reserves the right to exclude any applicant from enrolling in this study. By participating in this registry, you waive your right to privacy of protected health information and are willing to transmit and store data with the US Institute for Advanced Sinus Care and Research and its non-profit philanthropic affiliate, the Foundation for Advanced Sinus Care and Research. You agree to transmit protected health information via unsecured means such as via third-party email, text messaging, videomessaging with Facetime(TM), Skype(TM), and/or other unsecured means.

Instructions:

1. Please read thoroughly and sign the consent form to participate in this clinical registry. If you have any questions about the registry, please email usasinus@gmail.com.

2. Please complete the demographic and summary information and email to usasinus@gmail.com.

3. Please complete SNOT-22 questionnaires for the following time points:

  • 1 month prior to having surgery/trauma that created ENS

  • Please also complete the above listed SNOT-22 questionnaires with the above timepoints for any and all nasal surgeries performed and for any therapeutics attempted such as implants and/or platelet-rich plasma injections.

    • 1 month, 6 months, 12 months, then yearly after development of ENS

4. Please send all completed files as attachments in 1 email to usasinus@gmail.com with the following subject:

ENS Clinical Registry Enrollment - {Your Name}. Please save each SNOT-22 separately and describe the files as Name-Date of Questionnaire-Description of the Date. For example: SubinoyDas-June2012-1 month prior to developing ENS.doc

5. Please wait up to one week to for a confirmation email that you have been successfully enrolled in the Clinical Registry.

Links to Files:

Instructions

Consent Form

Demographic and Summary Information

SNOT-22 Questionnaire