On behalf of the Recurrent Respiratory Papillomatosis Taskforce, I am inviting you to participate in the development of an expert consensus statement regarding the use of systemic bevacizumab (Avastin) in the treatment of recurrent respiratory papillomatosis (RRP).
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.
Our first goal is to identify all physicians who have treated adults or children with RRP using intravenous bevacizumab. We request that you please complete this short (3 minute) questionnaire by clicking this link:
IV Avastin for RRP Survey
If you have not personally used systemic bevacizumab but know of someone who has we would be grateful if you could forward this on to them.
Douglas R. Sidell, MD
Simon Best, MD
Karen Zur, MD
Craig Derkay, MD
Anna Messner, MD
Karthik Balakrishnan, MD
Follow this link to take the online IV Avastin for RRP Survey:
Take the Survey
Or copy and paste the URL below into your internet browser:
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