RecruitingOBSERVATIONAL

Juvenile Recurrent Respiratory Papillomatosis: Establishment of a French National Cohort (PRR : National Cohort " REPA ")

This study is setting up a registry for a rare breathing condition in children called juvenile recurrent respiratory papillomatosis (RRP) across France. RRP causes small, wart-like growths in the airways, making it hard to breathe. While rare, it's the most common non-cancerous growth in children's voice boxes. Currently, doctors in France don't have a full picture of how many children are affected or the best ways to manage the condition. By collecting information from children diagnosed before age 18, the study aims to understand more about its causes, how it progresses, and how effective current treatments are. This knowledge will help create clear guidelines for better, more consistent care for children with RRP.

At a glance

Status

Recruiting

Sponsor

Imagine Institute

Enrolment target

200

Start

01 Oct 2022

Estimated completion

30 Sep 2032

Juvenile Recurrent Respiratory Papillomatosis

What is this study about?

This study is all about understanding a rare condition called juvenile recurrent respiratory papillomatosis, or RRP for short. This condition causes small, wart-like growths to develop in a child's airways, especially around the voice box. These growths can come back even after they've been removed, which is why it's called 'recurrent'. While it's not a common illness, it's the most frequent non-cancerous type of growth found in children's voice boxes.

At the moment, doctors in France don't have a lot of information about how many children have RRP, what might lead to it, or the best ways to treat it. By creating a national collection of information, this study hopes to shed light on these important questions. They want to understand how often it occurs, what might put a child at risk, and see if there are any genetic links.

The main goal is to use this gathered information to improve the care for children with RRP. By looking at how well different treatments and preventative measures work, the study aims to create clear, standard guidelines that doctors can use across France. This means all children with RRP could receive the best and most consistent care possible.

Key takeaways

This study focuses on a rare child breathing condition called RRP.
It aims to create a national database to understand RRP better in France.
Participation involves sharing existing medical information, no new tests or visits.
The goal is to improve future care and treatment guidelines for RRP.
All personal information will be kept confidential.
You can choose to participate or not, and can withdraw at any time.

Who may be eligible?

To be part of this study, a child must have been diagnosed with juvenile recurrent respiratory papillomatosis (RRP) before their 18th birthday. They also need to be receiving care at specific medical centres in France that are part of the study's network.

This includes centres called the MALO CRMR, any of the MALO network's CCMRs, or one of their main partner hospitals. These are specialized centres that already look after children with this condition.

A child cannot be included in the study if they (or their parents, if the child is under 18) do not wish for their personal health information to be collected and used for the study. Participation is always voluntary.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Is your child diagnosed with recurrent respiratory papillomatosis (RRP)?
Was your child under 18 when they were first diagnosed with RRP?
Is your child currently being treated at one of the specialized RRP centres in France (like a MALO network centre)?
Are you (and your child, if old enough) happy for their medical information to be used for this study?

Answer every question to see your result.

What does participation involve?

This study is focused on collecting existing information about children who already have recurrent respiratory papillomatosis (RRP). This means there are no extra visits to the doctor, new medications to take, or specific tests to undergo as part of the study itself. Instead, the doctors involved will be gathering health information that has already been recorded during your child's routine care at their specialist hospital. This existing information will then be added to the national database for the study. Your child's regular follow-up schedule and treatments will continue as normal, decided by their doctor, and will not be changed by taking part in this study. The total duration of participation isn't about active involvement, but rather refers to the period over which your child's already existing medical data will be included in the anonymous study records.

Potential risks and benefits

The main benefit of taking part in this study is that it will help doctors better understand juvenile recurrent respiratory papillomatosis (RRP). This improved understanding could lead to clearer treatment guidelines and better care for children with RRP in the future. As the study only collects existing medical information, there are no direct physical risks or additional appointments required for your child. The main consideration is ensuring the privacy of your child's health information. All data collected will be handled confidentially to protect your child's identity. You and your child always have the right to withdraw from the study at any time, meaning your child's data would no longer be used.

Locations (1)

hôpital Necker Enfants malades
Verified postcode
Paris, France· Recruiting

Common questions

What is recurrent respiratory papillomatosis (RRP)?

It's a rare condition where small, wart-like growths develop in a child's airways, especially around their voice box, which can make breathing difficult.

Why is this study being done?

Doctors in France want to learn more about how many children have RRP, what causes it, and the most effective ways to treat it to improve care.

Will my child need extra doctor's appointments?

No, this study only collects information from your child's existing medical records. There are no additional appointments or tests needed.

Is my child's information kept private?

Yes, all collected information is handled very carefully to protect your child's identity and privacy.

Can I decide not to take part?

Yes, taking part is completely voluntary, and you can choose to withdraw your child's information from the study at any time.

How to find out more

Nicolas LEBOULANGER, MD

nicolas.leboulanger@aphp.fr 0144494682 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.