2004 (New York City)
RRP Focus Session
The International RRP ISA Center and RRPF co-sponsored a RRP Focus Session on September 18, 2004 in conjunction with the American Academy of Otolaryngology meeting in New York City. Generous support for this meeting was provided by Medtronic Corporation and Stressgen Biotechnologies .
Readers are encouraged to go directly to the following PowerPoint presentations that were made available for distribution. Where these PowerPoint presentations were unavailable, we used the RRPF website summary which, in the interests of avoiding duplicated effort, we were given permission to copy.
Click on the hyperlink to go to the PowerPoint presentation:
(1) RRP Priorities, Statistics and Perspectives
(2) International RRP ISA Center
(3) Comments from Stressgen Biotechnologies Thomas Mingot
Stressgen provided an update on their immunotherapeutic treatment for RRP, HspE7. It is currently under consideration by the FDA for a Phase III clinical trial involving ~150 RRP patients. It is hoped that the FDA approval will come before the end of the year.
(4) Immune Responses in RRP
(5) Recurrent Respiratory Papillomatosis (RRP): Celebrex and COX-2 Inhibition
(6) Cidofovir Mechanisms in Suppressing Papilloma - Graciela Andrei, PhD, Rega Institute for Medical Research , Belgium
Anti-viral activity spectrum of cidofovir Papovaviridae
Some examples of treating laryngeal papillomas with cidofovir
1) Cidofovir was administered by local injection (directly into the tumor) at 1.25 mg/kg at weekly intervals. Complete regression of the tumor was achieved after 7 injections
Mechanisms of anti-viral activity associated with cidofovir
Anti-proliferative effect on papillomavirus cells
Further studies are ongoing to determine the selective mechanism of action of Cidofovir and other potential antiviral agents, such as PMEG, against HPV.
(7) Mumps and MMR Vaccine for RRP - the Saga Continues
Dr. Pashley said he first started using mumps in 1980, presented data at ASPO (American Society of Pediatric Otolaryngology) in May 2001. By January 2002 no mumps vaccine was available, so he started using MMR in January 2002. (Mumps is now available again.)
Dr. Pashley states, that to his knowledge, using a vaccine to actually treat a different disease has not been investigated before his study. If this treatment approach were to be proven effective, he believes that there may be other virally associated diseases which could be treated in this manner.
Excise papilloma with CO2 laser, 2-5 Watts
Table of results treating RRP patients with MMR:
(Where remission is defined as two typical surgical intervals in which the RRP patient is found to be disease free.)
Remission group includes 6 mumps alone failures who became MMR successes and includes 8 for whom a single MMR treatment resulted in remission.
Mumps alone gave a 75% remission with about the same follow up, based on treating 46 RRP patients.
(Complete results from using mumps alone is reported in Archives of Otolaryngology July 2002 pp 783-786 vol 128 and is available on line at www.archoto.com ).
Dr. Pashley notes that it is important to remember that this is an ongoing series and that this is the remission rate at the time of the survey, It may improve with longer treatment and follow up. Also there are no non-responders, i.e. everyone gets some beneficial lengthening in their intervals and less recurrence (Dr. Pashley believes that these patients then go into remission after the study period)
(RRP ISA editorial note: The data reported by Dr. Pashley appears to be at significant variance with the data reported by patients in our online survey and also in the RRPF survey. Also, see Bettie Steinberg's article on safety issues relating to MMR and other treatments. Also see remarks on Dr. Pashley's approach in Treatment Strategies>MMR and in the 2007 RRP Focus Session Report.)
(8) Merck's HPV Vaccine Research
(9) Two Methods of Cidofovir Injection in the Office Procedure Room
(10) HPV-6 and HPV-11 in RRP: Correlation of disease severity with HPV-11; Plans for future Workshops and public education
(11) Quality of Life Issues Effecting Pediatric RRP Patients
(Note: This talk was not presented because the impact of hurricane Ivan prevented Dr. Wiatrak from leaving Birmingham in time for our meeting. The summary of the presentation is based exclusively on a PowerPoint presentation that Dr. Wiatrak email us.)
The main focus of this study is to define what quality of life (QOL) is, determine whether it is effected in our RRP patients and how much.
Definitions of QOL
Health - the condition of being sound in body, mind or spirit; freedom from disease or pain.
Can it be measured? YES
Use of PedsQL to Assess Health-Related Quality of Life in Children with RRP
Results (27 patients ages 2-18)
RRP has a significant effect on QOL
Parents seem to perceive things worse than their self reporting children
Significance of study
Demonstrates in a ?more? objective way the effects of RRP on a patient's quality of life
Objective data may be used to justify more extensive RRP research which is still considered an orphan disease.