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Spinal and Bulbar Muscular AtrophyNCT03555578

Specified Drug-Use Survey of Leuprorelin Acetate Injection Kit 11.25 mg "All-Case Investigation: Spinal and Bulbar Muscular Atrophy (SBMA)"

An observational study of Spinal and Bulbar Muscular Atrophy, run by Takeda at 1 site in Japan.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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Trial summary

The purpose of this survey is to evaluate the long-term safety and efficacy of leuprorelin acetate injection kit 11.25 mg in patients with spinal and bulbar muscular atrophy (SBMA) in the routine clinical setting. Read more about this study

Who is it for?
Any age
Conditions the study is for
Spinal and Bulbar Muscular Atrophy
What is being tested?
Leuprorelin Acetate
Type of treatment
Injection or infusion
How many people
1,905 participants
Where
1 siteJapan
Study dates
2 Nov 2017to 30 Apr 2026
Phase
Observational
Are there results?
None posted in the registry

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages Any age
  • All sexes
  • No healthy volunteers
  • Child, Adult, Older adult

Study population: SBMA patients treated with Leuprorelin Acetate Injection Kit 11.25 mg as part of routine medical care

Who may be able to join

  • All SBMA patients who have been confirmed as receiving the drug

Who cannot join

  • None

Trial locations and contacts

1 site in 1 country.

Japan1 site
  • Takeda Selected Site

    Tokyo

Other trials in Japan

About this study

The purpose of this survey is to evaluate the long-term safety and efficacy of leuprorelin acetate injection kit 11.25 mg in patients with spinal and bulbar muscular atrophy (SBMA) in the routine clinical setting.

Read the detailed description

The drug being tested in this survey is called leuprorelin acetate injection kit 11.25 mg. This injection kit is being tested to treat people who have SBMA.

This survey is an observational (non-interventional) study and will look at the long-term safety and efficacy of the leuprorelin acetate injection kit 11.25 mg in the routine clinical setting. The planned number of observed patients will be approximately 300.

This multi-center observational trial will be conducted in Japan.

Being tested
Leuprorelin Acetate
Medical subject headings
Bulbo-Spinal Atrophy, X-Linked

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Leuprorelin AcetateDrug

    Also called Leuplin SR for Injection Kit 11.25 mg

    Leuprorelin Acetate Injection Kit

Study groups in NCT03555578
Study groupRoleWhat they receive
Leuprorelin Acetate 11.25 mgLeuprorelin Acetate Injection Kit 11.25 mg, every 12 weeks subcutaneously, for up to at most 8 years. Participants received interventions as part of routine medical care.
Receives: Drug: Leuprorelin Acetate

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Percentage of Participants who had One or More Adverse Drug Reactions

    Adverse drug reaction refers to adverse events related to administered drug. Percentage of participants who have the adverse drug reactions that occurred between initiation of treatment with the drug and 1 year after the start of treatment with the drug (or 3 months after the last dose of the drug if the treatment was discontinued within the first four doses) will be reported.

    Measured: Up to 1 Year

  2. Percentage of Participants who had One or More Serious Adverse Events

    Percentage of participants who have the serious adverse events that occurred between initiation of treatment with the drug and 1 year after the start of treatment with the drug (or 3 months after the last dose of the drug if the treatment was discontinued within the first four doses) will be reported.

    Measured: Up to 1 Year

Secondary outcomes (4)
  1. Percentage of Participants without Death Event

    Percentage of participants without events of death at final assessment point (up to 8 years from initiation of treatment) will be reported.

    Measured: At final assessment point (up to 8 years)

  2. Percentage of Participants without Pneumonia Requiring Hospitalization Event

    Percentage of participants without events of pneumonia requiring hospitalization at final assessment point (up to 8 years from initiation of treatment) will be reported.

    Measured: At final assessment point (up to 8 years)

  3. Percentage of Participants without Composite Events of Death and Pneumonia Requiring Hospitalization

    Percentage of participants without composite events of death and pneumonia requiring hospitalization at final assessment point (up to 8 years from initiation of treatment) will be reported.

    Measured: At final assessment point (up to 8 years)

  4. Percentage of Participants without Dysphagia Events

    Percentage of participants without events of dysphagia at final assessment point (up to 8 years from initiation of treatment) will be reported.

    Measured: At final assessment point (up to 8 years)

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted13 Jun 2018
  2. Study start2 Nov 2017
  3. Primary completion30 Apr 2026
  4. Study completion30 Apr 2026

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
1,905 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT03555578
Sponsor's protocol ID
Leuprorelin-5004
Other IDs
jRCT1080223924
Status last verified
May 2026
First submitted
1 Jun 2018
Last updated
22 May 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
Yes: Takeda provides access to the de-identified individual participant data (IPD) for eligible studies to aid qualified researchers in addressing legitimate scientific objectives (Takeda's data sharing commitment is available on https://clinicaltrials.takeda.com/takedas-commitment?commitment=5). These IPDs will be provided in a secure research environment following approval of a data sharing request, and under the terms of a data sharing agreement.

Questions about this trial

What is this clinical trial studying?

An observational study of Spinal and Bulbar Muscular Atrophy, run by Takeda at 1 site in Japan.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 22 May 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in Japan. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Percentage of Participants who had One or More Adverse Drug Reactions (time frame: Up to 1 Year). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 22 May 2026.

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