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Long-Term study tracks spinal cord cyst disease to guide future treatments

NCT ID NCT01150708

Knowledge-focused Sponsor: National Institute of Neurological Disorders and Stroke (NINDS) Source: ClinicalTrials.gov ↗

What the study statuses mean

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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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Sep 09, 2026 · Updated 3 times

Summary

This study followed 180 adults with syringomyelia, a condition where a cyst forms in the spinal cord, for up to 5 years. Researchers tracked symptoms, muscle strength, and MRI scans to learn how the disease progresses and how surgery affects outcomes. The goal was to gather knowledge to develop safer and more effective treatments.

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.

Participants

180 people

The number who actually took part.

Started

Aug 2010

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

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

Who is studied

The study population is 180 patients with syringomyelia or with a condition that predisposes to the formation of syringomyelia such as presyringomyelia or Chiari I malformation without syringomyelia. A syrinx or syringomyelia is defined as an intramedullary cyst that extends / length \> 1 spinal segment. Presyringomyelia will be defined as T2 hyperintensity \> 4mm diameter extending over one spinal segment and associated with either Chiari I Malformation or a spinal lesion.A Chiari I Malformation without syringomyelia is defined as descent of the cerebellar tonsils \> 5 mm below the foramen magnum without associated syringomyelia.

Ages

18 years and older

Sex

Anyone

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: To be eligible to participate in this research study, the subject must: 1. Be 18 years of age or older. 2. Have syringomyelia, presyringomyelia, or Chiari I malformation without syringomyelia. 3. Be able to give informed consent. ADDITIONAL CRITERIA FOR PATIENTS THAT MAY UNDERGO SURGERY (not required for study inclusion) 1. new or increased impairment in sensation, strength, or walking within the previous 2 years; and 2. an MRI-scan showing a syrinx or the presence of abnormal fluid and swelling in the spinal cord; the abnormality in the spinal cord must be located in a part of the spinal cord that could produce the patient s symptoms; and 3. evidence of abnormalities at the base of the skull or within the spine that are often associated with syringomyelia, or abnormalities in CSF circulation that increase the pressure of the cerebrospinal fluid; and 4. medical health that is sufficient to allow the subject to withstand a major surgical procedure and to remain active during the recovery period after surgery. EXCLUSION CRITERIA: The subject will not be eligible to participate in this research study if the subject: 1. Is pregnant (because multiple MRI scans might injure a fetus). 2. Cannot have an MRI scan as determined by the radiologist (see the risks below). 3. Has a problem with bleeding that cannot be corrected. Note: Prior surgery for syringomyelia does not result in exclusion from the study if there is radiographic evidence of recurrent or persistent syringomyelia after surgery for this condition (failed previous surgery).

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Conditions

The condition(s) this trial relates to.

Chiari malformation Chiari malformation type I syringomyelia

As listed by the trial registrant

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

Arnold Chiari deformity Syringomyelia

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

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