RRP Foundation Priorities and Perspectives

2005Bill Stern, DirectorBill Stern, DirectorRRP FoundationRRP Foundationbills@rrpf.orgbills@rrpf.orgwww.rrpf.orgwww.rrpf.org

Acknowledgements:Acknowledgements:Maura Weiner, DirectorMaura Weiner, DirectorChris Neuberger, DirectorChris Neuberger, Director

RRP Foundation PrioritiesRRP Foundation Priorities

Provide RRP Information; RRP Physician Provide RRP Information; RRP Physician Referral; Networking, Emotional and other Referral; Networking, Emotional and other SupportSupport

RRP AwarenessRRP AwarenessAre Pediatricians sufficiently aware of RRP?Are Pediatricians sufficiently aware of RRP?Coordinate with other HPV organizations to promote greater public (and Coordinate with other HPV organizations to promote greater public (and political) awareness of RRP and HPVpolitical) awareness of RRP and HPV

RRP EpidemiologyRRP EpidemiologyRRPF practitioner and patient databasesRRPF practitioner and patient databases (currently >750 patients)(currently >750 patients)Web based patient survey system - continue collaboration with T. Mingot Web based patient survey system - continue collaboration with T. Mingot

•RRPF Website (rrpf.org)RRPF Website (rrpf.org)•RRP NewsletterRRP Newsletter•RRP Reference ServiceRRP Reference Service

•RRPF ListServeRRPF ListServe•Sponsoring Charity Sponsoring Charity Travel for RRP patientsTravel for RRP patients

• Major patient/family concernsMajor 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 -Mortality - pulmonary involvementpulmonary involvement, malignancy, malignancy• Disease transmissionDisease transmission

• Research and future directionsResearch and future directions

RRP Foundation PrioritiesRRP Foundation Priorities

RRPF ListServe

http://health.groups.yahoo.com/group/rrpf/http://health.groups.yahoo.com/group/rrpf/

• Forum for exchange of information, ideas, Forum for exchange of information, ideas, opinions and emotions related to RRPopinions and emotions related to RRP• Currently ~340 members consisting of RRP patients, parents, Currently ~340 members consisting of RRP patients, parents,

practitioners and researcherspractitioners and researchers(at least 5% are RRP professionals)(at least 5% are RRP professionals)

• Serves as the main RRP Foundation email listServes as the main RRP Foundation email list• All posts are archived and are available, but All posts are archived and are available, but

only to membersonly to members• May choose to receive individual emails, a daily May choose to receive individual emails, a daily

digest or no emaildigest or no email• Subscription is easy and freeSubscription is easy and free

•Provide informational support for RRP families and Provide informational support for RRP families and practitionerspractitioners

• 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 hypotheses Validation of hypotheses • Clinical studiesClinical studies

•Web based survey linked to MySQL databaseWeb based survey linked to MySQL database•Coordinate with Int RRP ISA Cntr and RRP Task ForceCoordinate with Int RRP ISA Cntr and RRP Task Force

Collecting RRP Patient DataCollecting RRP Patient Data

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Above Cords At Cords Below Cords

Trachea Bronchial Lung

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otal

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20041998

22293

179441

177 72

8337

42 1632 13

Total Responses 2004 = 484Total Responses 1998 = 184

Sites of Involvement Sites of Involvement (normalized)(normalized)

Pulmonary RRPPulmonary RRP

Greatest risk of mortality from RRPGreatest risk of mortality from RRP Approx. 7% of RRP patients indicate lung Approx. 7% of RRP patients indicate lung

involvement involvement Despite significant advances in surgical Despite significant advances in surgical

techniques and adjunct therapies, pulmonary techniques and adjunct therapies, pulmonary RRP remains virtually untreatableRRP remains virtually untreatable

RRPF Research SupportRRPF Research Supportand Areas of Interestsand 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.

Clinical studies using HPV vaccines for RRP - Stressgen Clinical studies using HPV vaccines for RRP - Stressgen BioTechnologiesBioTechnologies

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.JImmune Response in RRP Patients - Bongura, et al., L.I.J Social issues impacting RRP patients - J. Woo, Harvard Univ.Social issues impacting RRP patients - J. Woo, Harvard Univ.

Assessing genetic patterns in treatment responseAssessing genetic patterns in treatment response HPV types, gene expression and RRP severityHPV types, gene expression and RRP severity

Assess roles and coordinate protocols for adjuncts currently usedAssess roles and coordinate protocols for adjuncts currently used Treatment of pulmonary RRP – establish referral center(s) to coordinate Treatment of pulmonary RRP – establish referral center(s) to coordinate

experimental treatments and clinical researchexperimental treatments and clinical research Will HPV vaccines/immunotherapy eventually eliminate RRP ?Will HPV vaccines/immunotherapy eventually eliminate RRP ?