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Program: 1:00-1:15PM Bill Stern - Welcome and Introductory Remarks - RRP Foundation update 1:15-1:30PM Michael Green - International RRP ISA Center 1:30-1:50PM.

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Presentation on theme: "Program: 1:00-1:15PM Bill Stern - Welcome and Introductory Remarks - RRP Foundation update 1:15-1:30PM Michael Green - International RRP ISA Center 1:30-1:50PM."— Presentation transcript:

1 Program: 1:00-1:15PM Bill Stern - Welcome and Introductory Remarks - RRP Foundation update 1:15-1:30PM Michael Green - International RRP ISA Center 1:30-1:50PM Craig Derkay, MD – RRP Task Force activities 1:50-2:10PM Farrell Buchinsky, MD - RRP Genetics 2:10-2:50PM Surgical approaches for RRP 2:10-2:30 Matt Brigger, MD - Pulse Dye Laser for treating RRP 2:30-2:50 Carter Wright, MD - In office BeamPath flexible CO2 laser fiber for treating RRP Break 3:05-4:05PM Adjuvant therapies: 3:05-3:25 Mark Shikowitz, MD - Celebrex therapy for RRP - Update on initial study and plans for a larger trial 3:25-3:45 Nigel Pashley, MD - An heterologous effect of MMR vaccine will induce remission in patients with RRP 3:45-4:05 Dr. Richard Schlegel - Therapeutic impact of artemisinin on papillomavirus 4:05-4:25PM HPV Vaccines: Dalya Guris, MD - Gardasil vaccine developed at Merck 4:25-5:00PM Discussion – RRP - future directions for prevention and treatment, including pulmonary RRP additional Q & A RRP Focus Session 2007 Agenda Saturday 15, September 2007, 1 – 5 PM Renaissance Hotel Washington, D.C., Renaissance Ballroom West B (In conjunction with the annual American Academy of Otolaryngology meeting) Medtronic, Inc. provided generous support for this meeting

2 RRP Foundation Priorities and Perspectives 2007 Acknowledgements: Maura Weiner, Director Chris Neuberger, Director Jenn Woo, Support Coordinator Marlene Stern, President Medtronic Foundation Medtronic Corp. - RRP Focus 2007 Bill Stern, Director RRP Foundation

3 Provide RRP Information; RRP Physician Referral; Networking, Emotional and other Support RRP Awareness RRP Research Support RRPF Website (rrpf.org)RRPF Website (rrpf.org) RRP NewsletterRRP Newsletter RRP Reference ServiceRRP Reference Service RRPF ListServeRRPF ListServe Sponsoring Charity Travel for RRP patientsSponsoring Charity Travel for RRP patients RRP Epidemiology Are Pediatricians sufficiently aware of RRP? Coordinate with other HPV organizations to promote greater public (and political) awareness of RRP and HPV RRPF practitioner and patient databases (currently >850 patients) Web based patient survey system (currently ~250 patients) RRP Foundation Priorities

4 RRPF Research Support and Areas of Interests RRP Quality of Life - L. Lewis et al.; J. Linderman, et al., U.A.B. RRP Quality of Life - L. Lewis et al.; J. Linderman, et al., U.A.B. Social issues impacting RRP patients - J. Woo, Harvard Univ Social issues impacting RRP patients - J. Woo, Harvard Univ Familial Genetics and RRP - F. Buchinsky, Center for Genomic Sciences Familial Genetics and RRP - F. Buchinsky, Center for Genomic Sciences Immune Response in RRP Patients - Bongura, et al., L.I.J Immune Response in RRP Patients - Bongura, et al., L.I.J Assessing genetic patterns in treatment response Assessing genetic patterns in treatment response HPV types, gene expression and RRP severity HPV types, gene expression and RRP severity Treatment of pulmonary RRP – establish referral center(s) to coordinate experimental treatments and clinical research Treatment of pulmonary RRP – establish referral center(s) to coordinate experimental treatments and clinical research HPV Serology and vaccine trials for RRP HPV Serology and vaccine trials for RRP RRP/HPV Awareness - coordinate with other advocate groups RRP/HPV Awareness - coordinate with other advocate groups

5 Major patient/family concerns Diagnosis issuesDiagnosis issues Coping with RRPCoping with RRP Treatments - surgical and adjunctTreatments - surgical and adjunct Voice - preservation, restoration/improvementVoice - preservation, restoration/improvement Mortality - pulmonary involvement, malignancyMortality - pulmonary involvement, malignancy Disease transmissionDisease transmission RRP Foundation Priorities

6 RRPF ListServe Forum for exchange of information, ideas, opinions and emotions related to RRPForum for exchange of information, ideas, opinions and emotions related to RRP Currently ~500 members consisting of RRP patients, parents, practitioners and researchers (at least 5% are RRP professionals)Currently ~500 members consisting of RRP patients, parents, practitioners and researchers (at least 5% are RRP professionals) Serves as the main RRP Foundation listServes as the main RRP Foundation list All posts are archived and are available, but only to membersAll posts are archived and are available, but only to members May choose to receive individual s, a daily digest or no May choose to receive individual s, a daily digest or no Subscription is easy and freeSubscription is easy and free

7 Provide informational support for RRP families and practitionersProvide informational support for RRP families and practitioners Statistics to help provide guidance of disease courseStatistics to help provide guidance of disease course Assessments of surgical and adjunct treatmentsAssessments of surgical and adjunct treatments Where patients can obtain treatmentsWhere patients can obtain treatments Improve understanding of RRP epidemiology,Improve understanding of RRP epidemiology, including prevalence, incidence, morbidity and mortality.including prevalence, incidence, morbidity and mortality. Availability of a database for RRP research studiesAvailability of a database for RRP research studies Validation of hypothesesValidation of hypotheses Clinical studiesClinical studies Web based survey linked to MySQL databaseWeb based survey linked to MySQL database Coordinate with Int RRP ISA Ctr and RRP Task ForceCoordinate with Int RRP ISA Ctr and RRP Task Force Collecting RRP Patient Data

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11 Pulmonary RRP Greatest risk of mortality from RRP (>90% of RRP deaths are related to pulmonary RRP) Greatest risk of mortality from RRP (>90% of RRP deaths are related to pulmonary RRP) Approx. 6% of RRP patients indicate lung involvement Approx. 6% of RRP patients indicate lung involvement Despite significant advances in surgical techniques and adjunct therapies, pulmonary RRP remains virtually untreatable Despite significant advances in surgical techniques and adjunct therapies, pulmonary RRP remains virtually untreatable Propose to establish referral center(s) to coordinate experimental treatments and clinical research Propose to establish referral center(s) to coordinate experimental treatments and clinical research

12 Recent from a grandmother of a pulmonary RRP patient: Bill, Wanted to inform you of Jackie’s surgery yesterday….Doctors had to suction out her one lung and flush it with saline before they could do surgery as she has so little lung capacity left. She has also had a pneumonia she cannot get over for the past 3 weeks and the gunk gets behind all of her tumors and she hasn’t got the strength to cough it out. We were told yesterday that she could have 6 weeks - 6 months left. Dr Rimmel went on to say that the longest anyone has ever lived once diagnosed with RRP in the lung is 7 years and she has made it 12….much longer then anyone thought she would. It was a sad day yesterday for our family. Jackie so wants to be a normal 18 year old and she doesn’t have a chance. This disease is awful.


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