Actively Recruiting

Phase 1
Phase 2
Age: 18Years +
All Genders
ID06351592

First in Human Study to Evaluate the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of Multiple Ascending Doses of Intrathecally Administered ALN-SOD in Participants With Amyotrophic Lateral Sclerosis and SOD1 Mutations

Led by Regeneron Pharmaceuticals · Updated on 2026-02-27

42

Participants Needed

16

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

Researchers are evaluating an experimental drug called ALN-SOD for people with Amyotrophic Lateral Sclerosis (ALS) caused by changes in the Superoxide Dismutase-1 (SOD1) gene, known as SOD1-ALS. This is the first time ALN-SOD will be given to people, aiming to assess its safety and how well it is tolerated. The study also looks at how the drug affects specific biomarkers in blood and cerebrospinal fluid, the presence of antibodies against the drug, and its impact on ALS symptoms. Participants will receive ALN-SOD in multiple ascending doses administered intrathecally, meaning directly into the fluid around the spinal cord. The study includes several groups receiving different dose levels, including an optional cohort with a dose up to a high level. There is also a 4-week double-blind period where some participants receive a placebo. The trial lasts up to approximately 228 weeks, covering treatment and follow-up phases. During the study, participants will undergo regular assessments including blood and cerebrospinal fluid tests to measure drug levels and biomarkers like neurofilament light chain and SOD1 protein. Researchers will monitor adverse events and check for antibodies that might affect the drug's action. They will also track changes in ALS symptoms using standard scales. The total participation may last over four years, with ongoing safety and effect evaluations throughout this period.

CONDITIONS

Brief Title

First in Human (FIH) Study of ALN-SOD in Adult Participants With Amyotrophic Lateral Sclerosis Associated With Mutation in the SOD1 Gene (SOD1-ALS)

Who Can Participate

Age: 18Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Weakness caused by ALS with a SOD1 gene variant linked or likely linked to ALS
  • Slow Vital Capacity (SVC) at least 50% of predicted value for age, gender, and height, measured upright
  • Body Mass Index (BMI) of 35 kg/m2 or less at screening
  • Stable dose of riluzole or edaravone for at least 4 weeks before dosing, if taking these medications
  • Platelet count greater than 50,000 per microliter
  • Normal blood pressure readings as defined in the protocol
Not Eligible

You will not qualify if you...

  • Currently participating in another interventional clinical trial
  • Has had a tracheostomy
  • Has dementia as assessed by the investigator
  • Has uncontrolled psychiatric illness including psychosis, recent suicidal thoughts, or untreated major depression in past 30 days
  • History of brain or spinal disease/injury interfering with lumbar puncture, cerebrospinal fluid circulation, or safety assessment
  • Has an implanted shunt or central nervous system catheter
  • Has any condition that may confuse study results or increase risk as judged by the investigator
  • Hospitalized for more than 24 hours for any reason other than ALS within 30 days before screening
  • Received treatment with tofersen within 6 months before screening
  • Other protocol-defined inclusion or exclusion criteria may apply

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

Treatment

Duration - 4 weeks (double-blind treatment period)

Participants receive multiple ascending doses of ALN-SOD or placebo administered intrathecally as part of the study.

Weekly visits for up to 4 weeks

Follow-up

Duration - Up to approximately week 228

Participants are monitored for safety, tolerability, and biomarker changes after treatment ends.

Periodic visits up to week 228

Trial Site Locations

Total: 16 locations

1

Concord Repatriation General Hospital

Concord, New South Wales, Australia, 2139

Actively Recruiting

2

Macquarie University

Sydney, New South Wales, Australia, 2109

Actively Recruiting

3

Sunshine Coast University Hospital

Birtinya, Queensland, Australia, 4575

Actively Recruiting

4

KU Leuven

Leuven, Vlaams-Brabant, Belgium, 3000

Actively Recruiting

5

University of Alberta Hospital, Edmonton, Division of Neurology

Edmonton, Alberta, Canada, T6G 2G3

Actively Recruiting

6

University Hospital - London Health Sciences Centre

London, Ontario, Canada, N6A 5A5

Actively Recruiting

7

Sunnybrook Research Institute

Toronto, Ontario, Canada, M4N 3M5

Actively Recruiting

8

Montreal Neurological Institute and Hospital

Montreal, Quebec, Canada, H3A 2B4

Actively Recruiting

9

Hokkaido University Hospital

Sapporo, Hokkaido, Japan, 060-8648

Actively Recruiting

10

Tokushima University Hospital

Tokushima, Tokushima, Japan, 770-0042

Actively Recruiting

11

Toho University Omori Medical Center

Ōta-ku, Tokyo, Japan, 143-8541

Actively Recruiting

12

Kyoto University Hospital

Kyoto, Japan, 606-8507

Actively Recruiting

13

Hanyang University Seoul Hospital

Seoul, South Korea, 04763

Actively Recruiting

14

Seoul National University Hospital

Seoul, South Korea, 3080

Actively Recruiting

15

Kaohsiung Chang Gung Memorial Hospital

Kaohsiung City, Taiwan, 83301

Actively Recruiting

16

Taipei Veterans General Hospital

Taipei, Taiwan, 11211

Actively Recruiting

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Research Team

C

Clinical Trials Administrator

How is the study designed?

Study Type

INTERVENTIONAL

Masking

NONE

Allocation

RANDOMIZED

Model

SEQUENTIAL

Primary Purpose

TREATMENT

Number of Arms

4

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