Test of Aquatic Mobility of SMA Infants
This study aims to understand how babies with Spinal Muscular Atrophy (SMA), a condition that weakens muscles, move. Traditional tests on examination tables can be hard because gravity makes it difficult for these babies to move much. So, doctors are trying a new approach: watching babies in a special bath. The water helps reduce the effect of gravity, making it easier to see even tiny movements using special sensors. This 'bath test' could help doctors spot improvements in babies that might not be seen otherwise. It also aims to create a better, more consistent way to track how babies with SMA are doing and how well their treatments are working.
At a glance
What is this study about?
Spinal Muscular Atrophy (SMA) is a serious condition that affects a baby's muscles, making them weak and causing problems with movement and breathing. While there are now new treatments for SMA, it's still hard for doctors to measure how much a very weak baby can move. This is because on a normal examination table, gravity makes it very difficult for them to lift their arms or legs.
This study is trying a new way to understand these babies' movements. They've developed a 'bath test' where babies are observed in water. The idea is that in water, the effects of gravity are much less. This might allow doctors to see small movements that aren't visible outside the water. Special sensors will be used to accurately record these movements. This could help identify babies who have the potential for more movement than usually seen, and help track their progress over time.
Currently, some doctors use videos parents take of their babies bathing, but these aren't always consistent. This study wants to create a standard, reliable way to measure these movements in water. By doing this, doctors hope to get a clearer picture of a baby's muscle function, which can help them make better decisions about their care and treatment. It's important to know that this study itself won't change the treatment a child receives, but it aims to provide better tools for doctors in the future.
Key takeaways
- SMA is a condition that weakens muscles, affecting movement.
- This study uses a 'bath test' to observe babies' movements in water, making it easier to see.
- Special sensors will record tiny movements in both dry and water conditions.
- The goal is to create a better, standard way to track SMA progress.
- This research will not change your child's current treatment.
Who may be eligible?
To join this study, a baby must have a confirmed diagnosis of Spinal Muscular Atrophy (SMA) type 1, which means the condition started before they were 6 months old. They should be receiving their usual medical care for SMA and be less than 12 years old, with a height under 90 cm at the start of the study.
Both parents or guardians will need to give their permission for their child to take part. The family must also be part of a social security scheme in the country where the study is taking place.
Babies cannot join the study if they have any other health issues with their spine or problems with their heart or lungs that could affect the study results. Also, those covered by a specific French health aid program for foreign people cannot 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.
- Does your child have a confirmed SMA type 1 diagnosis?
- Did their SMA start before they were 6 months old?
- Is your child younger than 12 years old and shorter than 90 cm?
- Are you both parents/guardians able to provide written consent?
- Is your family part of a social security scheme?
- Does your child not have other serious spinal, heart, or lung conditions?
What does participation involve?
If your child takes part in this study, they will have their movements assessed in two ways: once in 'dry' conditions (like on a changing table) and once in 'water' conditions (in a specially designed bathtub). During these assessments, small, harmless sensors will be attached to your child to record their movements. Blurry video recordings will also be made to help the research team understand the movements and the sensor data. The study will also compare the information gathered in the bath to other standard tests for SMA. There are no medications involved in this study. The study aims to create a new assessment tool, not to change your child's current treatment. The research team will explain how many visits are needed and the total length of your child's involvement in the study.
Potential risks and benefits
Locations (1)
- Infantile neuromuscular unity - Department of paediatric neurological care and intentive care unity, Raymond Poincaré Hospital - APHPVerified postcodeGarches, France· Recruiting
Common questions
What is SMA?
SMA stands for Spinal Muscular Atrophy. It's a genetic condition that makes muscles weak, affecting movement and sometimes breathing.
Why use water to test movement?
Water reduces the effect of gravity, making it easier for babies with weak muscles to move. This can help doctors see subtle movements they might otherwise miss.
Will this study change my child's treatment?
No, this study is about finding better ways to measure movement. It will not change the medical treatment your child is currently receiving or will receive.
What are 'inertial sensors'?
These are small devices, like those in smartphones, that can detect movement, speed, and direction. They'll be used to accurately record your baby's movements.
Where is this study taking place?
This is a joint project led by Raymond Poincaré Hospital, with other children's hospitals in France also taking part.
How to find out more
Susana Quijano-Roy, MD, PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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