RecruitingOBSERVATIONAL

Prospective Longitudinal Monocentric Study to Measure Limb Movement in Patients With FGFR3-related Skeletal Dysplasia

This study aims to understand arm and leg movements in people with achondroplasia or hypochondroplasia, two common types of skeletal dysplasia. Researchers want to find out if a new digital tool, called Syde®, can reliably measure these movements. By doing this, they hope to get a clearer picture of how these conditions affect movement over time. Taking part would involve having your movements recorded using the Syde® tool and answering some questions. The study is open to both children aged 3 and over, and adults up to 65 years old, who can walk on their own and have a confirmed diagnosis of achondroplasia or hypochondroplasia. The information gathered could help improve our understanding and care for people with these conditions in the future.

At a glance

Status

Recruiting

Sponsor

SYSNAV

Enrolment target

Start

06 Feb 2026

Estimated completion

01 Feb 2028

Achondroplasia Hypochondroplasia

What is this study about?

This study is looking into two conditions called achondroplasia and hypochondroplasia. These are both types of 'skeletal dysplasia', which means they affect how bones grow, particularly leading to shorter limbs. The main goal of this research is to understand more about how people with these conditions move their arms and legs. Researchers hope to see if a new digital tool, called Syde®, can accurately track and measure these movements over time.

Think of it like this: if you want to understand how a car drives, you might measure things like its speed and how smoothly it turns corners. In this study, researchers want to measure how people with achondroplasia and hypochondroplasia move their bodies, especially their arms and legs. Using a digital tool could offer a very precise way to do this, helping doctors and scientists understand the conditions better and track any changes in movement. This kind of information, collected over time, is sometimes called a 'natural history study' because it helps us understand how the condition naturally progresses.

Ultimately, the information gathered from this study could be really helpful. It might lead to better ways to measure how these conditions affect daily life, and could even help develop new treatments or therapies in the future. By knowing more about movement patterns, healthcare professionals can better support people living with achondroplasia and hypochondroplasia.

Key takeaways

This study measures arm and leg movements in people with achondroplasia or hypochondroplasia.
It uses a new digital tool (Syde®) to see if it can reliably track movements.
The study includes both children (3+) and adults (up to 65) who can walk unassisted.
It aims to build a better understanding of how these conditions affect movement over time.
Taking part involves using a device and answering questionnaires, with no new medicines.
Your contribution helps researchers learn more to improve future care for these conditions.

Who may be eligible?

This study is looking for volunteers aged 3 to 65 years old. To join, you must have a confirmed diagnosis of either achondroplasia or hypochondroplasia, meaning a genetic test has shown you have one of these conditions. You also need to be able to walk on your own for at least 10 metres.

There are also some reasons why you might not be able to join. For example, if you have another condition that affects your height, movement, or balance, or if you have recently had a serious injury or surgery on your arms or legs. You also can't take part if you have had, or are planning to have during the study, limb-lengthening surgery. If you are pregnant or planning to become pregnant, or if you have certain thinking or understanding difficulties that would make it hard to follow the study instructions, you wouldn't be able to participate. This is to make sure the study is safe for everyone involved and that we get the most accurate results.

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 between 3 and 65 years old?
Do you have a genetically confirmed diagnosis of achondroplasia or hypochondroplasia?
Can you walk on your own for at least 10 metres?
Have you had recent limb surgery or injury in the last 6 months?
Are you planning to have limb-lengthening surgery during the study?
Are you pregnant or planning to become pregnant during the study?

Answer every question to see your result.

What does participation involve?

If you decide to take part, the main thing you'll be doing is having your limb movements measured using a special digital tool called Syde®. This will involve wearing the device and having your movements recorded. You'll also be asked to fill out some questionnaires. You'll have these recording periods every 6 months, over a longer period that isn't fully described but involves returning the device at the end of the study. For children under 18, their parents or legal guardians will need to give permission and also help them understand and follow the study steps. The study doesn't involve any new medications or treatments, as it's about observing movements.

Potential risks and benefits

Taking part in this study won't directly improve your health, as it's not testing a new treatment. However, the information you provide will be very valuable in helping researchers understand achondroplasia and hypochondroplasia better. This could lead to better care and treatments for people with these conditions in the future. The risks of taking part are expected to be very low, mainly involving the time and effort needed to complete questionnaires and use the Syde® device. You can choose to stop being part of the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Hopital Necker
Verified postcode
Paris, France· Recruiting

Common questions

What is Syde®?

Syde® is a special digital tool that the researchers want to see if it can accurately measure how people move their arms and legs.

Do I have to take any new medicine?

No, this study does not involve taking any new medicines. It's focused on observing and measuring your movements.

Will this study make me better?

This study is not designed to directly treat your condition or make you feel better. It's about learning more to help others in the future.

How long will I be involved?

The study involves recording periods every 6 months, and you'll need to return the device at the end of the study, suggesting it will be over an extended period.

Can children join the study?

Yes, children aged 3 and older can join, but their parents or guardians must give permission and help them take part.

How to find out more

Ferial Toumi

ferial.toumi@sysnav.fr +33 2 78 00 10 98 Official trial record

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