RRP & Avastin Online Survey for Patients/Parents

RRP Community- Anonymous Survey to Patients

 

The recurrent respiratory papillomatosis (RRP) task force is currently working to develop an expert consensus statement for the use of systemic bevacizumab (Avastin) in the treatment of RRP. We are in the process of identifying all practitioners who have experience using intravenous bevacizumab for this purpose.

If you or someone you know has been treated with intravenous bevacizumab we invite you to complete following 1-minute survey asking for the name and location of the hospital where treatment occurred. We are not requesting any personal or patient information. In no way will your personal information be linked to any email, survey, or study:

Link to Anonymous survey: RRP + Avastin Treating Hospital Information

Or copy and paste url into browserhttps://stanforduniversity.qualtrics.com/jfe/form/SV_aaa22uB5G5o443H

This is a completely anonymous survey. We cannot link your name or information to any answers you submit in this survey. There is also no way for us to identify you based on the information provided about the institution.

If you have any questions, please contact Kim McClellan at themcclellanfamily@comcast.net

 

Sincerely,

 

Douglas R. Sidell, MD

Stanford University

Department of Otolaryngology, Head and Neck Surgery

Division of Pediatric Otolaryngology

 

Background:

 

Although anecdotal evidence suggests bevacizumab to serve as a disease-suppressant rather than a cure for patients with severe RRP, it has shown great promise in dramatically reducing papilloma burden in the majority of patients with severe disease who undergo infusion. Despite this promise, many key facets of treatment remain undetermined: 1) optimal dosing concentration, 2) treatment interval and duration, 3) appropriate follow-up laboratory and/or imaging studies, and 4) outcome measures. Developing a registry for ongoing data collection is critical for understanding outcomes including biopsy results, symptom profile, pulmonary sequelae, complications, response to treatment, relapse and response after retreatment. In addition, by establishing consensus and collecting data through this process, practitioners can justify the use of systemic bevacizumab for severe RRP, as this medication is often not available at many major medical centers who provide ongoing treatment patients with severe disease.

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