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Researchers launch study to understand rare paralysis conditions

NCT ID NCT06553976

Knowledge-focused Sponsor: Boston Children's Hospital Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026

Summary

This study is collecting health data and blood samples from 100 people with specific types of hereditary spastic paraplegia (SPG4 and SPG5A). The goal is to create a shared database and biobank to better understand how the disease progresses. This information will help prepare for future clinical trials and improve care for patients.

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 study could provide the foundation for future clinical trials and better diagnostic tools for hereditary spastic paraplegia.
What could go wrong
This is an observational pilot study with only 100 participants, so it may not capture the full range of the disease. It does not test any treatment directly.

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 100 people

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

Started

Jun 2024

Expected to finish

Jun 2027

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

This study will enroll individuals with a known clinical and molecular diagnosis of spastic hereditary paraplegia type 4 (SPG4, SPAST) or Hereditary Spastic Paraplegia type 5A (SPG5A, CYP7B1), and/or their family members of interest (if applicable). We plan to enroll at least 100 individuals under a shared regulatory, data, and sample infrastructure over a 2-year time period.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Male or female patients of all ages with a clinical and molecular diagnosis of hereditary spastic paraplegia type 4 (SPG4, SPAST) or hereditary spastic paraplegia type 5A (SPG5A, CYP7B1). Exclusion Criteria: * Not having such a diagnosis and/or not being related to such individual.

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Conditions

The condition(s) this trial relates to.

hereditary spastic paraplegia hereditary spastic paraplegia 4 hereditary spastic paraplegia 5A lateral sclerosis motor neuron disorder neuromuscular disease Spastic Paraplegia Type 4

As listed by the trial registrant

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

Early onset hereditary spastic paraplegia Hereditary spastic paraplegia Neuromuscular diseases Primary lateral sclerosis Spastic paraplegia 4 Spastic paraplegia 5A Spastic paraplegia, hereditary SPG4 SPG5A

How to take part

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

  1. The places running it

    11 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    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

  • Boston Children's Hospital

    RECRUITING

    Boston, Massachusetts, 02215, United States

  • Cincinnati Children's Hospital Medical Center

    NOT_YET_RECRUITING

    Cincinnati, Ohio, 45229-3039, United States

  • Columbia University - Irving Medical Center

    NOT_YET_RECRUITING

    New York, New York, 10032, United States

  • Massachusetts General Hospital

    NOT_YET_RECRUITING

    Boston, Massachusetts, 02215, United States

  • Scottish Rite for Children

    NOT_YET_RECRUITING

    Dallas, Texas, 75219, United States

  • Seattle Children's Hospital

    NOT_YET_RECRUITING

    Seattle, Washington, 98105, United States

  • Texas Children's Hospital

    NOT_YET_RECRUITING

    Houston, Texas, 77035, United States

  • University of Iowa Carver College of Medicine

    NOT_YET_RECRUITING

    Iowa City, Iowa, 52242, United States

  • University of Miami Miller School of Medicine

    NOT_YET_RECRUITING

    Miami, Florida, 33136, United States

  • University of Michigan School of Medicine

    NOT_YET_RECRUITING

    Ann Arbor, Michigan, 48109, United States

  • University of Washington School of Medicine

    NOT_YET_RECRUITING

    Seattle, Washington, 98195, United States

More trials for these conditions

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