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NCT06150716 · Ionis Pharmaceuticals, Inc.

Orbit Study: A Study to Evaluate the Safety, Pharmacokinetics, and Pharmacodynamics of Intrathecally Administered ION356 in Participants With Pelizaeus Merzbacher Disease (PMD)

What this study is about

The primary purpose of this study is to evaluate the safety and how well patients handle the treatment of ION356.

View original scientific description

The primary purpose of this study is to evaluate the safety and tolerability of ION356.

Interventions

DRUG

ION356

Administered as intrathecal (IT) injection.

Primary outcome measures

Number of Participants With Treatment-Emergent Adverse Events (TEAEs) and Serious TEAEs

Time frame: Up to Week 145

Number of Participants With Clinically Significant Change from Baseline in Laboratory Assessments

Time frame: Baseline up to Week 145

Number of Participants With Clinically Significant Change From Baseline in Neurological Examination Findings

Time frame: Baseline up to Week 145

Number of Participants With Clinically Significant Change From Baseline in Vital Signs

Time frame: Baseline up to Week 145

Number of Participants With Clinically Significant Change From Baseline in Electrocardiography (ECG)

Time frame: Baseline up to Week 145

Number of Participants With Change From Baseline in Concomitant Medication Use

Time frame: Baseline up to Week 145

Who can participate

This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.

Inclusion criteria

  • Participant's parent or legally accepted representative can provide informed consent, attend all scheduled study visits, provide feedback regarding the participant's symptoms, and can comply with all study requirements.
  • Diagnosis of PMD with genetic confirmation of PLP1 gene duplication.
  • Clinical phenotype and brain imaging consistent with a diagnosis of PMD.
  • Male between the ages of 2 and 17 years, inclusive, at the time of informed consent.
  • Able and willing to meet all study requirements (in the opinion of the Investigator), including travel to Study Center, procedures, measurements, and visits.

Exclusion criteria

  • Clinically significant abnormalities in medical history, laboratory tests or physical examination.
  • Unwillingness to comply with study procedures, including follow-up, as specified by this protocol, or unwillingness to cooperate fully with the Investigator.
  • Any contraindication or unwillingness to undergo magnetic resonance imaging (MRI).
  • Treatment with another investigational drug, biological agent, or device within 1 month of Screening, or 5 half-lives of the investigational agent, whichever is longer.
  • Previous treatment with an oligonucleotide (including small interfering ribonucleic acid) within 4 months of Screening if a single dose was received, or within 12 months of Screening if multiple doses were received. This exclusion does not apply to vaccines (both messenger ribonucleic acid \[mRNA\] and viral vector vaccines).
  • History of gene therapy or cell transplantation, or any experimental brain surgery.
  • Current obstructive hydrocephalus.
  • Known brain or spinal disease or previous spinal surgery that would interfere with the lumbar puncture (LP) process, CSF circulation, or safety assessment.
  • Hospitalization for any major medical or surgical procedure involving general anesthesia within 12 weeks prior to Screening or planned during the study.
  • Have any other conditions, which, in the opinion of the Investigator, would make the participant unsuitable for inclusion, or could interfere with the participant participating in or completing the study.

Where

  • Atlanta, Georgia
  • Philadelphia, Pennsylvania
  • Salt Lake City, Utah

Related conditions & keywords

Pelizaeus-Merzbacher Disease

Frequently asked questions

What is a clinical trial?

A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.

Is it safe to participate?

Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.

Will I be compensated?

Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.

Will I receive a placebo instead of treatment?

When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.

Can I leave a trial if I change my mind?

Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.

How long does a clinical trial last?

Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.

Data: ClinicalTrials.gov · synced Dec 12, 2025 · Source of record for eligibility and locations

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1 of 24 participants interested
4% interest

See if this study fits

A short prescreen based on this study's listed criteria. A coordinator confirms eligibility — this is not a medical assessment.

Preparing your pre-screening questions…

Study locations

Choose your preferred location, or select flexible during enrollment.

RECRUITING

Atlanta

Georgia

Location available
RECRUITING

Philadelphia

Pennsylvania

Location available
RECRUITING

Salt Lake City

Utah

Location available

Express your interest

Share your contact details and a study coordinator can follow up about screening.

Secure & Confidential

Your information is protected and will only be shared with the research team.

What participation can include

  • Study-related care provided by the research team
  • Close monitoring by medical professionals
  • Possible compensation for time and travel*
  • The option to withdraw at any time
  • Contributing to medical research that may help future patients

*Compensation varies by study. Confirm details with coordinator.

Typical next steps

  1. 1.Submit this form
  2. 2.Phone screening
  3. 3.In-person assessment if eligible
  4. 4.Begin participation

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Looking for Pelizaeus-Merzbacher Disease Treatment in Atlanta?

Join others in Georgia exploring innovative treatment options through clinical research

Pelizaeus-Merzbacher Disease Treatment Options in Atlanta, Georgia

If you're searching for Pelizaeus-Merzbacher Disease treatment in Atlanta, participating in a clinical research study may provide access to innovative approaches under expert medical supervision. This study is actively recruiting participants in Atlanta, Philadelphia, Salt Lake City and surrounding areas.

Clinical trials offer participants the opportunity to receive cutting-edge treatments while contributing to medical research that may help future patients with Pelizaeus-Merzbacher Disease. All study-related care is provided at no cost to participants.

Local Sites
3 locations in Georgia
Now Enrolling
Up to 24 participants
Quick Start
Screening available now

Why Consider a Clinical Trial for Pelizaeus-Merzbacher Disease?

Potential Benefits

  • Access to new treatment approaches before public availability
  • Close monitoring by experienced medical professionals
  • Study-related care provided at no cost
  • Contribute to medical research for Pelizaeus-Merzbacher Disease

What to Expect

  • Initial screening to determine eligibility
  • Regular check-ups and monitoring visits
  • Possible compensation for time and travel
  • You can withdraw at any time

Frequently Asked Questions About This Pelizaeus-Merzbacher Disease Study

Important Clinical Trial Information

This information is provided for educational purposes and does not constitute medical advice. Clinical trial participation involves potential risks and benefits. Eligibility requirements apply and will be assessed during the screening process.

Study identifier: NCT06150716. For complete study details, visit ClinicalTrials.gov. Always consult with your healthcare provider before making decisions about your medical care or participating in clinical research.