Juvenile Recurrent Respiratory Papillomatosis: Establishment of a French National Cohort (PRR : National Cohort " REPA ")
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Juvenile Recurrent Respiratory Papillomatosis. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
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.
Primary outcome measures
- Epidemiology of juvenile RRP in France by clinical information [Time frame: 10 years]
- Epidemiology of juvenile PRR in France according to vaccine and adjuvant therapeutic information [Time frame: 10 years]
- Epidemiology of juvenile PRR in France by paraclinical information [Time frame: 10 years]
Secondary outcome measures (3)
- Define standardized management of juvenile RRP [Time frame: 10 years]
- Therapeutic management of RRP [Time frame: 10 years]
- Prevention of RRP [Time frame: 10 years]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
France · 1 center
- hôpital Necker Enfants malades — Paris
Identifiers
NCT: NCT06000527 · HJ-20-REPA