Cerliponase Alfa Observational Study in the US

NCT ID: NCT04476862

Last Updated: 2026-01-14

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

ACTIVE_NOT_RECRUITING

Total Enrollment

35 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-08-19

Study Completion Date

2030-08-31

Brief Summary

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This is a multicenter, observational study for patients with a confirmed diagnosis of neuronal ceroid lipofuscinosis type 2 (CLN2 disease), also known as TPP1 deficiency, who intend to be or are currently being treated with cerliponase alfa. Patients receiving or expected to receive cerliponase alfa within 60 days of signing the informed consent form (ICF) may be eligible to enroll in the study, assuming all regulatory requirements for sites that have agreed to participate and protocol inclusion criteria are met. Data may be collected for all or some of the assessments as outlined in the protocol, dependent upon the clinic's and/or individual patient's standard of care.

Detailed Description

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Conditions

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Late-Infantile Neuronal Ceroid Lipofuscinosis Type 2

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Cerliponase alfa patients

Patients who are currently on or plan to start taking cerliponase alfa within 60 days of signing the study informed consent form.

Cerliponase Alfa

Intervention Type DRUG

Commercially available product provided to patient by participating clinic site.

Administration Kit

Intervention Type DEVICE

Commercially available administration kit provided to the patient by participating clinic site.

Interventions

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Cerliponase Alfa

Commercially available product provided to patient by participating clinic site.

Intervention Type DRUG

Administration Kit

Commercially available administration kit provided to the patient by participating clinic site.

Intervention Type DEVICE

Other Intervention Names

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Brineura

Eligibility Criteria

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Inclusion Criteria

1. Diagnosed with CLN2 disease.
2. Currently receiving or plan to begin treatment with cerliponase alfa.
3. Written informed consent/assent obtained.

Exclusion Criteria

1\. Currently receiving treatment in another investigational device or drug study.
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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BioMarin Pharmaceutical

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Director, MD

Role: STUDY_DIRECTOR

BioMarin Pharmaceutical

Locations

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Arkansas Children's Hospital

Little Rock, Arkansas, United States

Site Status

Children's Hospital of Orange County

Orange, California, United States

Site Status

Children's Hospital of Colorado

Aurora, Colorado, United States

Site Status

Children's National Hospital

Washington D.C., District of Columbia, United States

Site Status

Advent Health

Orlando, Florida, United States

Site Status

Children's Healthcare of Atlanta

Atlanta, Georgia, United States

Site Status

Rush University Medical Center

Chicago, Illinois, United States

Site Status

Boston Children's Hospital,

Boston, Massachusetts, United States

Site Status

Children's Hospital Minnesota

Minneapolis, Minnesota, United States

Site Status

NYU Langone Medical Center

New York, New York, United States

Site Status

Mt. Sinai School of Medicine

New York, New York, United States

Site Status

University of Rochester Medical Center

Rochester, New York, United States

Site Status

Nationwide Children's Hospital

Columbus, Ohio, United States

Site Status

University of Oklahoma Health Sciences Center

Oklahoma City, Oklahoma, United States

Site Status

Texas Children's Hospital

Houston, Texas, United States

Site Status

Seattle Children's Hospital

Seattle, Washington, United States

Site Status

Countries

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United States

Other Identifiers

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190-501

Identifier Type: -

Identifier Source: org_study_id

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