Recurrent Respiratory Papillomatosis Foundation

Cycle 2
Web:
Contact:

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 May 2024

Clinical
Disease Class
Rare otorhinolaryngological diseases
Rare respiratory diseases
Body Systems
Respiratory
Organs
Lungs
Nose
Throat
Trachea, cervical
Genes
None specified / unknown
Type of Inheritance
Not specified / unknown
Disease Mechanism(s)
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)
Prebirth
Incidence
11-50
Prevalence
1001-10000
Populations and/or ancestry with higher prevalence
Lower socioeconomic
Symptoms / Phenotypes
breathing difficulties
dysphagia
hoarseness / hoarse voice
speech problems / apraxia
Biomarkers
Diagnostic
· HPV 6 and HPV 11
Existing Therapies
Drugs used off-label
· bevacizumab, pembro, cidofovir
Other
· Repeated surgeries
Organizational & Research
Cell Lines
Cancer/tumor cells
Cell Lines, location
Not specified
Cell Lines, share
IDK
Disease Model
Not specified / unknown
Disease Model, location
Not specified
Disease Model, share
Unknown
Clinical Trial Role
Data analysis
Data sharing
Focus group
Funding
Meeting with regulators
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
Yale University
Center of Excellence
None
Registry
Yes, we have a registry that we created
Data Collected, Registry
Electronic health records/electronic medical records
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
No, we do not have any ICD codes
Diagnostic Guidelines
In the process of creating diagnostic guidelines
Clinical/Treatment Guidelines
In the process of creating clinical/treatment guidelines
Organizational Roles
No full-time staff
Science Advisory Board Policies
Yes, 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
South America