Overview
Recurrent respiratory papillomatosis (RRP), also called laryngeal papillomatosis or juvenile laryngeal papillomatosis, is a rare condition where non-cancerous wart-like growths called papillomas form in the airways — most often in the voice box (larynx) and throat. These growths are caused by certain strains of human papillomavirus (HPV), specifically HPV types 6 and 11. The papillomas tend to grow back repeatedly after removal, which is why the word 'recurrent' is part of the name. The most common symptom is a hoarse or changed voice, which can gradually worsen over time. In children, the condition can also cause noisy breathing or difficulty breathing if the growths block the airway. RRP can appear in children (juvenile-onset RRP) or adults (adult-onset RRP). The juvenile form is often acquired during birth when a baby passes through a birth canal of a mother infected with HPV. Treatment usually involves repeated surgeries to remove the papillomas and keep the airway open. There is no permanent cure, and most patients need many procedures over their lifetime. Some medications, like bevacizumab (Avastin), are used alongside surgery to try to slow regrowth. The HPV vaccine has shown promise in reducing recurrence in some patients and may help prevent the disease in the general population.
Key symptoms:
Hoarse or raspy voiceVoice that changes or gets worse over timeNoisy or high-pitched breathing (stridor)Difficulty breathing, especially in childrenChronic coughFeeling like something is stuck in the throatDifficulty swallowingFrequent throat clearingLoss of voice (in severe cases)Recurrent respiratory infectionsReduced ability to exercise due to breathing difficulty
Clinical phenotype terms (23)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
9 eventsOhio State University — PHASE1, PHASE2
Mayo Clinic — PHASE1
Precigen, Inc — PHASE4
Massachusetts General Hospital — NA
National Cancer Institute (NCI) — PHASE2
Imagine Institute
Precigen, Inc — PHASE1, PHASE2
Massachusetts General Hospital — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availablePapzimeos
treatment of adults with recurrent respiratory papillomatosis
Rare Disease Specialist
Treatment Centers
8 centersYale School of Medicine
📍 New Haven, Connecticut
👤 Sara Pai
Stanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Recurrent respiratory papillomatosis.
Community
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Start the conversation →Latest news about Recurrent respiratory papillomatosis
Disease timeline:
New recruiting trial: The Natural History and Biological Study of Pulmonary Recurrent Respiratory Papillomatosis (pRRP)
A new clinical trial is recruiting patients for Recurrent respiratory papillomatosis
New recruiting trial: Zopa Retreatment and Vector Shedding in Adults With RRP
A new clinical trial is recruiting patients for Recurrent respiratory papillomatosis
New recruiting trial: Juvenile Recurrent Respiratory Papillomatosis: Establishment of a French National Cohort (PRR : National Cohort " REPA ")
A new clinical trial is recruiting patients for Recurrent respiratory papillomatosis
New recruiting trial: Autologous Dendritic Cell Vaccine For Recurrent Respiratory Papillomatosis (RRP) Patients
A new clinical trial is recruiting patients for Recurrent respiratory papillomatosis
New recruiting trial: Merck IIT: RRP Pembro and Lenvatinib
A new clinical trial is recruiting patients for Recurrent respiratory papillomatosis
New trial: The Natural History and Biological Study of Pulmonary Recurrent Respiratory Papillomatosis (pRRP)
Phase NA trial recruiting.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How often do you expect I (or my child) will need surgery, and what factors affect that?,Which HPV type is causing the papillomas, and what does that mean for how serious the disease might be?,Should I (or my child) receive the HPV vaccine, and could it help reduce recurrences?,Are there any medications like bevacizumab that might be appropriate to use alongside surgery?,What warning signs should prompt me to go to the emergency room rather than wait for a scheduled appointment?,Is there a risk of the papillomas spreading to the lungs, and how will we monitor for that?,Are there clinical trials or newer treatments I should know about?
Common questions about Recurrent respiratory papillomatosis
What is Recurrent respiratory papillomatosis?
Recurrent respiratory papillomatosis (RRP), also called laryngeal papillomatosis or juvenile laryngeal papillomatosis, is a rare condition where non-cancerous wart-like growths called papillomas form in the airways — most often in the voice box (larynx) and throat. These growths are caused by certain strains of human papillomavirus (HPV), specifically HPV types 6 and 11. The papillomas tend to grow back repeatedly after removal, which is why the word 'recurrent' is part of the name. The most common symptom is a hoarse or changed voice, which can gradually worsen over time. In children, the co
How is Recurrent respiratory papillomatosis inherited?
Recurrent respiratory papillomatosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Recurrent respiratory papillomatosis?
Yes — 8 recruiting clinical trials are currently listed for Recurrent respiratory papillomatosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Recurrent respiratory papillomatosis?
22 specialists and care centers treating Recurrent respiratory papillomatosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Recurrent respiratory papillomatosis?
1 patient support program are currently tracked on UniteRare for Recurrent respiratory papillomatosis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.