Evaluating the safety and effectiveness of Spinraza injection for spinal muscular atrophy

A Multicenter, Observational, Postmarketing Surveillance Study of Spinraza Injection (Nusinersen Sodium) When Used in Routine Medical Practice in Korea

Observational Biogen · NCT04317794

This study is testing how safe and effective the Spinraza injection is for people with spinal muscular atrophy in Korea who are starting or already receiving this treatment.

Quick facts

Study typeObservational
Enrollment145 (estimated)
SexAll
SponsorBiogen Industry-sponsored
Locations16 sites (Busan and 15 other locations)
Trial IDNCT04317794 on ClinicalTrials.gov

What this trial studies

This observational study aims to assess the safety and effectiveness of nusinersen sodium injection, known as Spinraza, in patients with spinal muscular atrophy (SMA) in Korea. Participants will be those currently receiving or about to start treatment with Spinraza, and the study will monitor their responses in a real-world setting. The study will collect data on adverse effects and treatment outcomes to provide insights into the drug's performance outside of controlled clinical trials.

Who should consider this trial

Good fit: Ideal candidates for this study are individuals diagnosed with 5q-linked spinal muscular atrophy who are currently receiving or about to initiate treatment with Spinraza.

Not a fit: Patients who are hypersensitive to Spinraza or are currently participating in other interventional clinical trials for SMA may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could provide valuable information on the long-term safety and effectiveness of Spinraza, improving treatment strategies for patients with SMA.

How similar studies have performed: While this study is observational and focuses on postmarketing surveillance, similar studies have previously shown the effectiveness of nusinersen in controlled settings, suggesting potential for success in this real-world evaluation.

Eligibility criteria

Show full inclusion / exclusion criteria
Key Inclusion Criteria:

* Currently receiving or about to initiate treatment with commercial Spinraza in the postmarketing setting
* Genetic documentation of 5q-linked SMA

Key Exclusion Criteria:

* Hypersensitivity to the active substance or any of the excipients of Spinraza
* Ongoing participation or participation within 6 months or 5 half-lives of the agent (whichever is longer) of enrollment in other interventional clinical trials for the treatment of SMA
* Inability to comply with study requirements

NOTE: Other protocol defined Inclusion/Exclusion criteria may apply.

Where this trial is running

Busan and 15 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Muscular Atrophy, Spinal
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.