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Swedish survey asks: what shapes daily life with chiari malformation?

NCT ID NCT07818122

Knowledge-focused Sponsor: Karolinska Institutet 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 This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 14, 2026 · Last updated Sep 15, 2026 · Updated 1 time

Summary

Researchers at Karolinska Institutet are surveying adults in Sweden who have Chiari malformation type 1, a condition where part of the brain pushes into the spinal canal. The study asks how these patients rate their health-related quality of life compared with the general Swedish population, and whether factors such as having had surgery make a difference. Participants answer standardized questionnaires, and researchers combine those answers with national health register data. The goal is to understand which factors are linked to better or worse daily life for people with this condition.

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 the survey maps which factors shape daily life with Chiari malformation type 1, doctors could target those factors and design better support for patients.
What could go wrong
A survey captures people's own reports at one point in time, so it can show patterns but cannot prove what causes better or worse quality of life. People who choose to answer may differ from those who do not.

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

About 1,004 people

The number the study aims to enrol. It can still change while the study runs.

Started

Aug 2026

Expected to finish

Dec 2026

An estimate. End dates often move.

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.

Who is studied

The study population consists of adult patients with Chiari malformation type 1 (CM1) identified through the Swedish National Patient Register, which contains nationwide information on inpatient and specialized outpatient care. To ensure diagnostic validity, non-operated patients were included only if they have a documented evaluation at a neurosurgical unit. Operated patients were identified through procedure codes recorded in the register.

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: * diagnosis of Arnold Chiari Malformation (ICD-code Q07.0) * for operated patients: record of posterior fossa decompression (procedure code ABE50) * for non-operated patients: the diagnosis Q07.0 recorded during an outpatient visit to a neurosurgical unit Exclusion Criteria: * record of spina bifida diagnosis (Q05.X) * for non-operated patients: record of the procedures duraplasty (procedure code AAK10) or another operation on the cranium or dura (procedure code AAK99)

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Conditions

The condition(s) this trial relates to.

Chiari malformation Chiari malformation type I

As listed by the trial registrant

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

Chiari malformation type I

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Department of Clinical Neuroscience, Karolinska Institutet

    Stockholm, Sweden

More trials for these conditions

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