Juvenile Recurrent Respiratory Papillomatosis: Establishment of a French National Cohort (PRR : National Cohort " REPA ")
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 200
- 试验地点
- 1
- 主要终点
- Epidemiology of juvenile PRR in France by paraclinical information
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •Patients objecting to the collection of their personal data
- •Parents of minor patients objecting to the collection of their child's personal data
结局指标
主要结局
Epidemiology of juvenile PRR in France by paraclinical information
时间窗: 10 years
results of pulmonary imaging, genetic, anatomopathological and immunological tests
Epidemiology of juvenile RRP in France by clinical information
时间窗: 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
时间窗: 10 years
Vaccination and adjuvant therapy information
次要结局
- Define standardized management of juvenile RRP(10 years)
- Prevention of RRP(10 years)
- Therapeutic management of RRP(10 years)