Juvenile Recurrent Respiratory Papillomatosis: Establishment of a French National Cohort (PRR : National Cohort " REPA ")
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Juvenile Recurrent Respiratory Papillomatosis
- Sponsor
- Imagine Institute
- Enrollment
- 200
- Locations
- 1
- Primary Endpoint
- Epidemiology of juvenile PRR in France by paraclinical information
- Status
- Recruiting
- Last Updated
- 2 years ago
Overview
Brief Summary
Recurrent respiratory papillomatosis (RRP) is a rare disease. However, it is the most common benign laryngeal tumor in children. To date, no epidemiological data are available in France. The aim of this study is to establish the epidemiology of juvenile PPR.
Detailed Description
Recurrent respiratory papillomatosis (RRP) is characterized by the recurrent proliferation of multiple polypoid squamous tumors in the respiratory tract, linked to HPV infection. RRP is a rare disease. However, it is the most common benign laryngeal tumor in children. There are currently no French national epidemiological data on this disease. The data collected by the reference centers will enable us to gain a better understanding of this pathology in terms of epidemiology, risk factors, genetic susceptibility and clinical manifestations, as well as to significantly study the efficacy of the various existing therapies and preventive measures, in order to establish a clear, standardized and optimal guideline.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Patients with juvenile PRR (disease onset before age 18)
- •Followed in the :
- •The MALO CRMR
- •One of the MALO network's CCMRs
- •One of the main correspondent centers
Exclusion Criteria
- •Patients objecting to the collection of their personal data
- •Parents of minor patients objecting to the collection of their child's personal data
Outcomes
Primary Outcomes
Epidemiology of juvenile PRR in France by paraclinical information
Time Frame: 10 years
results of pulmonary imaging, genetic, anatomopathological and immunological tests
Epidemiology of juvenile RRP in France by clinical information
Time Frame: 10 years
age at onset of disease, symptoms, severity score, intensity of disease characterized by need for endoscopies
Epidemiology of juvenile PRR in France according to vaccine and adjuvant therapeutic information
Time Frame: 10 years
Vaccination and adjuvant therapy information
Secondary Outcomes
- Define standardized management of juvenile RRP(10 years)
- Prevention of RRP(10 years)
- Therapeutic management of RRP(10 years)