RecruitingOBSERVATIONAL

Oral Health Status of Cystic Fibrosis Patients. An Online Survey in Collaboration With the Vaincre la Mucoviscidose Patient Association.

This study is an online survey for adults with Cystic Fibrosis (CF) in France. It aims to gather up-to-date information on the oral health status of people with CF. Cystic Fibrosis is a lifelong condition that can affect the body in many ways, including oral health. Previous studies mostly focused on children and found things like dry mouth, tooth wear, and stronger tooth enamel, but fewer cavities. As new treatments mean people with CF are living much longer, this survey wants to understand oral health in adults, including gum disease and its potential link to breathing problems. The findings will help improve dental care and quality of life for CF patients.

At a glance

Status

Recruiting

Sponsor

Assistance Publique - Hôpitaux de Paris

Enrolment target

400

Start

30 Apr 2025

Estimated completion

31 Jul 2025

Cystic Fibrosis

What is this study about?

This study is about understanding the oral (mouth) health of adults living with Cystic Fibrosis (CF). CF is a genetic condition that affects many parts of the body, including the lungs. While previous research has looked at oral health in children with CF, these studies showed things like dry mouth, worn-down teeth, and stronger tooth enamel, but surprisingly fewer cavities. However, these studies didn't fully explore gum disease or how oral health affects daily life for people with CF.

Thanks to advancements in medicine, particularly new treatments like Kaftrio®, people with CF are living much longer, with many now reaching adulthood. This change means we need to update our understanding of how CF affects the oral health of adults. Gum disease, for example, is becoming more relevant to study because the mouth can hold bacteria that might affect lung health, which is very important for people with CF.

To get this important information, researchers are conducting an online survey. This survey will ask adults in France with CF about their oral health. By collecting real-life experiences from a large number of people, the study hopes to create a clearer picture of their specific oral health needs. The ultimate goal is to use this knowledge to improve dental care and overall well-being for everyone living with CF.

Key takeaways

This is an online survey about oral health for adults with Cystic Fibrosis (CF).
It aims to update knowledge on CF-related oral health, especially for adults.
Participation involves answering a questionnaire from home.
Your input could help improve future dental care for people with CF.
It's open to adults aged 18 and over, living in France, who speak French.

Who may be eligible?

To take part in this survey, you need to be an adult, which means you must be 18 years old or older. You also need to have Cystic Fibrosis. Additionally, you should be able to speak and understand French well enough to read the study information and answer the questions.

Essentially, if you are an adult living with Cystic Fibrosis in France and can understand French, you are likely able to participate. You just need to agree to be part of the study; no one will be forced to participate.

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.

Are you 18 years old or older?
Do you have Cystic Fibrosis?
Do you live in France?
Can you read and understand French well enough to complete a survey?

Answer every question to see your result.

What does participation involve?

This study is an online survey. If you choose to take part, you will be asked to complete a questionnaire online. There are no clinic visits, medication to take, or specific health assessments required as part of your participation in this particular study. You will simply answer the questions provided in the survey. The researchers have not specified how long the questionnaire will take to complete, but typically online surveys are designed to be completed in one sitting. Once you've submitted your answers, your involvement in the study is complete.

Potential risks and benefits

Taking part in this survey generally has very low risks. The main thing is that you might spend some time answering questions about your oral health. There are no known physical risks as it's an online questionnaire and doesn't involve any medical procedures. A potential benefit is that your responses will help researchers better understand the specific oral health needs of adults with Cystic Fibrosis. This understanding could lead to improved dental care and advice for others living with CF in the future. Remember, you can choose to stop participating in the survey at any time, for any reason, without it affecting your medical care.

Locations (1)

Marjolaine GOSSET
Verified postcode
Ivry-sur-Seine, France· Recruiting

Common questions

What is this study trying to find out?

It's trying to get a clearer picture of the oral health of adults with Cystic Fibrosis, especially since people with CF are living longer now.

Do I have to go to a clinic or take medicine?

No, this is an online survey, so you won't need to visit a clinic or take any medication.

Who is eligible to participate?

Adults (18+) in France with Cystic Fibrosis who can understand French are eligible to take part.

How long will it take to complete the survey?

The study doesn't specify the exact time, but online surveys are usually designed to be completed in one session.

Will my privacy be protected?

While the study details don't explicitly say, ethical research studies always protect your personal information and keep your answers private.

How to find out more

Marjolaine GOSSET, MD, PhD

marjolaine.gosset@aphp.fr +33 (0)1 49 59 48 20 Official trial record

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