Recurrent Respiratory Papillomatosis Foundation
Cycle 2
Recurrent Respiratory Papillomatosis (RRP) is a rare disease that is characterized by the growth of tumors in the respiratory tract caused by the human papilloma virus (HPV). Although the tumors primarily occur in the larynx on and around the vocal cords, these growths may spread downward and affect the trachea, bronchi, and occasionally the lungs. The most common symptom of RRP is a voice that is persistently hoarse, weak, low in pitch, breathy, or strained, as well as a chronic cough.
Last updated 04/30/2025
Clinical
Disease Class
Otorhinolaryngological diseases
Respiratory diseases
Body Systems
Respiratory
Organs
Lungs
Nose
Throat/pharynx
Trachea, cervical
Known Genetic Link
No, the disease is not known to have a genetic basis
causative_genes
None specified / unknown
contributory_genes
None specified / unknown
Type of Inheritance
Not specified / unknown
Newborn Screening
Not applicable
Disease Mechanism(s)
Other
Pathogen/infection
Age of Onset
Adolescence (12-17)
Adulthood (age 18-64)
Early childhood (age 1+-5)
Elderly (age 65+)
Infancy (age 0-1)
Middle childhood (6-11)
Average Age at Diagnosis
Adulthood (age 18-64)
Early childhood (age 1+-5)
Life Expectancy
Adulthood (age 18-64)
Elderly (age 65+)
Affected Sex(es)
Female
Male
National Prevalence
1001-10000
Global Prevalence
10000+
National Incidence
Less than 10
Global Incidence
Less than 10
Populations and/or ancestry with higher prevalence
Third world, urban, countries that do not use the most recent HPV vaccine.
Symptoms / Phenotypes
breathing difficulties
dysphagia
hoarseness / hoarse voice
speech problems / apraxia
Biomarkers
Diagnostic
· HPV 6 and HPV 11
Existing Therapies
Off-Label Drug Use
Organizational & Research
Cell Lines
None
Cell Lines, Institution
None
Cell Lines, share
N/A
Disease Model
None
Disease Model, share
N/A
Clinical Trial Role
Data analysis
Data sharing
Focus group
Funding
Meeting with regulators
Outcome measures, development
Recruitment and outreach, patients
Recruitment and outreach, trial sites/physicians
Results dissemination, publication
Study material design, review (not protocol)
Study protocol design, review
Travel coordination
Biobank, Institution
Yale University
Biobank, Involvement
Funded
Center of Excellence, Institution
None
Registry
Yes, we have a registry that we created
Data Collected, Registry
Clinical data
Imaging data
Longitudinal natural history data
Medication usage
Patient contact info
Patient-reported data
Data Entered by, Registry
Patients
Platform, Registry
IAMRARE
Natural History Study
Yes, we have a natural history study that we created
Data Collected, Natural History Study
Patient-reported outcomes
Platform, Natural History Study
CoRDS
IAMRARE
FDA Patient Listening Session
Yes
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
We are working on obtaining an ICD-11 code
Diagnostic Guidelines
Yes, we have guidance available on our website
In the process of creating formal diagnostic guidelines for publication in a peer-reviewed journal
In the process of developing accredited guidelines
Science Advisory Board Policies
Yes, not willing to share SAB policies
Research Network Policies
Does not have a CRN
Research Roadmap
Yes we have a Research Roadmap, and will share policies
International Chapters
None
International Partners
Europe