RecruitingOBSERVATIONAL

Neuro-Orthopaedic Disorders During Aging in Patients With Neuromotor Disability

This study investigates how conditions affecting nerves and muscles (neuromotor disability) can lead to bone and joint problems as people get older. This includes understanding the risk of fractures. At the moment, we don't fully know how these issues progress or how effective current treatments are in the long term. This research aims to fill those gaps. Doctors want to learn more about these problems, their impact on daily life, other health issues that might arise, and the various treatments used. The goal is to gather information from patient records to improve care for adults with neuromotor disability.

At a glance

Status

Recruiting

Sponsor

Institut de Sante Parasport Connecte Synergies

Enrolment target

2,000

Start

01 May 2022

Estimated completion

01 Feb 2034

Disability or Chronic Disease Leading to Disablement

What is this study about?

This research study is looking into how problems with your bones and muscles, which are linked to nerve conditions, change over time as you get older. If you have a neuromotor disability, it means you have difficulties with movement because of damage to your brain, spinal cord, or other nerves. For example, this could be due to a condition you were born with or one you developed later.

Doctors have noticed that people with these conditions might be more likely to develop bone and joint issues as they age, including a higher risk of broken bones. However, we don't fully understand how these problems develop naturally or how well the treatments currently used actually work over many years. This study aims to gather this missing information.

The main goal is to get a clearer picture of these bone and muscle problems, how they affect your daily life and overall health, and what sorts of treatments are being used. By understanding this better, doctors hope to improve care and quality of life for people living with neuromotor disabilities.

Key takeaways

Study looks at bone and muscle issues in people with nerve conditions as they age.
Aims to understand how these problems develop and how treatments work long-term.
Researchers will review existing medical records, not conduct new tests.
No extra appointments or changes to your treatment required.
Information gathered could improve future care for neuromotor disabilities.
You can decide not to participate without affecting your medical care.

Who may be eligible?

To be part of this study, you need to be at least 18 years old. You must also be receiving care at the Neuro Orthopaedic Unit (UPOH) within our university hospital's Physical Medicine and Rehabilitation Department. This unit specifically treats people with neuromotor disabilities.

Crucially, you or a close family member (if you're unable to decide for yourself) must agree to your medical information being included in the study. You also need to be part of a social security scheme, which is standard for healthcare in the UK.

You cannot take part if you are under court protection, as this has specific legal requirements that prevent participation in research studies like this.

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 a neuromotor disability?
Are you receiving care at the Neuro Orthopaedic Unit (UPOH) at our university hospital?
Do you or a close family member agree for your medical information to be used?
Are you affiliated with a social security scheme (e.g., NHS in the UK)?

Answer every question to see your result.

What does participation involve?

If you are included in this study, you won't need to do anything extra or have any special appointments. The researchers will simply be reviewing information that is already in your medical records at the hospital. This includes details from your past and current physical examinations, X-rays or scans, blood tests, and other health measurements. Since they are only looking at existing records, there will be no additional visits, new medical assessments, or changes to your current medication or treatment plan.

Potential risks and benefits

There are no direct personal benefits or risks to you for taking part in this study, as it only involves reviewing your existing medical records. Your treatment will not change, and you won't need to do anything differently. However, the information gathered from your records, combined with others, could help doctors better understand your condition and improve care for other people with similar neuromotor disabilities in the future. You have the right to withdraw your consent for your medical information to be used at any time without affecting your medical care.

Locations (1)

Department of Physical Medicine and Rehabilitation, Raymond Poincaré Hospital, AP-HP
Verified postcode
Garches, France· Recruiting

Common questions

What is a 'neuromotor disability'?

It means you have difficulty moving because of a condition affecting your brain, spinal cord, or nerves, which can be from birth or caused later.

Why is this study important?

It helps doctors understand how bone and muscle problems linked to nerve conditions change over time, so they can improve care for people as they age.

Will I need to do anything extra if I'm in the study?

No, you won't. The researchers will only look at information already in your medical notes.

Will my doctors know if I don't want to be in the study?

Yes, they will, but it won't affect your medical care in any way.

Who benefits from this research?

The findings could help improve understanding and future treatments for everyone with neuromotor disabilities.

How to find out more

François Genêt, MD-PhD

francois.genet@aphp.fr +33 1 47 10 70 82 Official trial record

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