A Real-world Long-term Safety and Immunogenicity Study of Olipudase Alfa Therapy in Pediatric Patients Less Than 2 Years of Age With Acid Sphingomyelinase Deficiency (ASMD)

NCT ID: NCT06192576

Last Updated: 2025-10-31

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

10 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-04-16

Study Completion Date

2029-01-15

Brief Summary

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US, multicenter, cohort, open label observational study with primary data collection. Ancillary protocol-specified procedures to address the study objectives (eg, assessment of ADA) may be considered outside the standard of care for acid sphingomyelinase deficiency (ASMD), but the study methodology remains non-interventional, as the additional collection of data from participants will not dictate treatment. The total overall study duration will be 5 years. The follow-up period will be a minimum of 1 year to a maximum of 3 years. The enrollment period will be up to 4 years, to allow a minimum of 1 year of follow-up for the last participant enrolled.

Detailed Description

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This is a hybrid study design. Patients need not travel to existing study sites in order to enroll.

Conditions

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Niemann-Pick Diseases Acid Sphingomyelinase Deficiency

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Olipudase alfa arm

Olipudase alfa

Intervention Type DRUG

This study will not administer any treatment, only observe the treatment as prescribed in real-world clinical practice.

Interventions

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Olipudase alfa

This study will not administer any treatment, only observe the treatment as prescribed in real-world clinical practice.

Intervention Type DRUG

Other Intervention Names

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Xenpozyme®

Eligibility Criteria

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Inclusion Criteria

* The participant must have ASMD type A/B or B and must be \<2 years of age at the time of treatment initiation, OR ASMD type A (without age restriction).
* The participant must weigh ≥ 2 kg \[The United States Prescribing Information (USPI)\] for olipudase alfa specifies this minimum weight for infants receiving olipudase alfa).
* The participant must have documented ASMD, as determined in peripheral leukocytes, cultured fibroblasts, or lymphocytes and/or by genotype determination.
* Signed informed consent must be provided by the participant's parent(s)/legal guardian(s), including compliance with the requirements and restrictions listed in the informed consent form (ICF) and in this protocol. The signed ICF must be provided before any protocol-related procedures are performed.
* The participant is eligible to start olipudase alfa enzyme replacement therapy or has received the first dose (and no more) of olipudase alfa, and has retrievable clinical, laboratory, and ADA data.

Exclusion Criteria

* The participant has received an investigational drug within 30 days or 5 drug half-lives before signature of the ICF and study enrollment.
* The participant is not suitable for participation for reasons determined by the Investigator, including medical or clinical conditions, or potential risk of noncompliance with study procedures.
* The participant is an immediate family member of employees of the study site or other individuals directly involved in study conduct, in conjunction with Section 1.61 of ICH-GCP Ordinance E6.
Maximum Eligible Age

2 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Pulse Infoframe Ltd.

INDUSTRY

Sponsor Role collaborator

Sanofi

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Ann and Robert H Lurie Children's Hospital of Chicago- Site Number: 001002

Chicago, Illinois, United States

Site Status RECRUITING

Children's Hospital Medical Center- Site Number: 001003

Cincinnati, Ohio, United States

Site Status RECRUITING

Nationwide Children's Hospital - PIN- Site Number : 1001-1

Columbus, Ohio, United States

Site Status RECRUITING

Pulse InfoFrame US Inc.- Site Number: 001001

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Dell Children's Medical Center- Site Number : 1001-2

Austin, Texas, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Trial Transparency email recommended (Toll free for US & Canada)

Role: CONTACT

800-633-1610 ext. option 6

Facility Contacts

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Joshua Baker

Role: primary

312-227-4000

Nicole K. Weaver

Role: primary

800-647-4805

William Burns

Role: primary

614-722-3535

Femida Gwadry-Sridhar

Role: primary

519-872-1471

James B. Gibson

Role: primary

512-628-1810

Related Links

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https://asmd.healthie.net/register

Register (healthie.net)

Other Identifiers

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U1111-1294-8169

Identifier Type: REGISTRY

Identifier Source: secondary_id

OBS18020

Identifier Type: -

Identifier Source: org_study_id

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