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Rett syndrome bone mystery: study probes early osteoporosis

NCT ID NCT02110797

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study looked at why girls with Rett syndrome often develop weak bones (osteoporosis) at a very young age. Researchers checked bone density, looked at medical history, and measured certain proteins in the blood. The goal was to find risk factors and understand the biological causes, which could lead to better monitoring and care.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this could help identify girls with Rett syndrome at highest risk for osteoporosis, enabling earlier monitoring and preventive care.
What could go wrong
This is an observational study, not a treatment trial. It aims to understand causes, not test a therapy, so direct patient benefit is not immediate.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

98 people

The number who actually took part.

Started

Dec 2009

Finished

Jun 2014

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

5 to 45 years

Sex

Female participants only

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * RETT syndrome * MECP2 mutation Exclusion Criteria: * no identified MECP2 mutation * history of drugs that interfere with bone metabolism

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Conditions

The condition(s) this trial relates to.

osteoporosis Rett syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Rett syndrome with proven MECP2 mutation

Contacts and locations

Locations

  • Kremlin bicêtre

    Bicêtre, 94275, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.