Mucopolysaccharidosis VII Disease Monitoring Program

NCT ID: NCT03604835

Last Updated: 2026-01-12

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

50 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-01-29

Study Completion Date

2033-05-31

Brief Summary

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The objectives of this study are to characterize MPS VII disease presentation and progression and assess long-term effectiveness and safety, including hypersensitivity reactions and immunogenicity of vestronidase alfa.

Detailed Description

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The Mucopolysaccharidosis VII Disease Monitoring Program (MPS VII DMP) is a global, prospective, multicenter, longitudinal protocol designed to characterize MPS VII disease presentation and progression, assess long-term effectiveness and safety of vestronidase alfa, including hypersensitivity reactions and immunogenicity , as well as prospectively investigate longitudinal change across biomarker(s), clinical assessments, and patient/ caregiver-reported outcome measures in a representative population. The aim of this DMP is to collect data on patients with MPS VII to provide a comprehensive dataset on the clinical presentation, heterogeneity, and disease progression, and meaningful standardized ICH GCP-quality data collected in-clinic across multiple sites globally. The DMP is not a randomized study and both treated and untreated patients will be enrolled.

Conditions

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Mucopolysaccharidosis VII MPS VII MPS 7 Sly Syndrome

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Study Groups

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Patients with MPS VII receiving vestronidase-alfa

via prescription, or early access/ compassionate use program

No Intervention

Intervention Type OTHER

Access to any treatment is through authorized commercial use or available expanded access programs only and not as a part of this DMP.

Patients with MPS VII not receiving vestronidase-alfa

no treatment or treatment other than vestronidase alfa

No Intervention

Intervention Type OTHER

Access to any treatment is through authorized commercial use or available expanded access programs only and not as a part of this DMP.

Interventions

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No Intervention

Access to any treatment is through authorized commercial use or available expanded access programs only and not as a part of this DMP.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Diagnosis of MPS VII based on laboratory diagnosis, including either enzymatic or mutation analysis.
* Willing and able to provide written informed consent or, in the case of patients under the age of 18 (or below adult ages as defined by local laws and regulations) or patients \>18 years of age who have cognitive deficiencies, provide written assent (if required) and written informed consent by a legally authorized representative after the nature of the DMP has been explained, and prior to any research-related procedures.
* Willing to comply with DMP visit schedule.

Exclusion Criteria

* Concurrent participation in other pharmaceutical company-sponsored interventional clinical trial unless approved by Ultragenyx.
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Ultragenyx Pharmaceutical Inc

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Director

Role: STUDY_DIRECTOR

Ultragenyx Pharmaceuticals Inc.

Locations

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Children's Hospital of Orange County

Orange, California, United States

Site Status RECRUITING

Children's National Health System

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

Site Status RECRUITING

Ann & Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status RECRUITING

University of Michigan

Ann Arbor, Michigan, United States

Site Status RECRUITING

New York University Langone Medical Center

New York, New York, United States

Site Status TERMINATED

University of Utah Medical Center

Salt Lake City, Utah, United States

Site Status RECRUITING

Seattle Children's Hospital

Seattle, Washington, United States

Site Status RECRUITING

Laboratorio de Neuroquimica Dr. N.A. Chamoles S.R.L.

Buenos Aires, Buenos Aires, Argentina

Site Status RECRUITING

Hospital de Clínicas de Porto Alegre

Porto Alegre, Rio Grande do Sul, Brazil

Site Status RECRUITING

Centre Hospitalier Universitaire La Timone

Marseille, Provence-Alpes-Côte d'Azur Region, France

Site Status RECRUITING

Universitätsmedizin der Johannes Gutenberg-Universität Mainz

Mainz, , Germany

Site Status RECRUITING

Erasmus University Medical Center Rotterdam

Rotterdam, South Holland, Netherlands

Site Status TERMINATED

Centro Hospitalar do Porto

Porto, , Portugal

Site Status RECRUITING

Hospital Universitario Virgen del Rocío Pabellón Infantil

Seville, Sevilla, Spain

Site Status RECRUITING

Countries

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United States Argentina Brazil France Germany Netherlands Portugal Spain

Central Contacts

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Patients Contact: Trial Recruitment

Role: CONTACT

1-888-756-8657

HCPs Contact: Medical Information

Role: CONTACT

1-888-756-8657

Related Links

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Other Identifiers

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EUPAS25082

Identifier Type: OTHER

Identifier Source: secondary_id

UX003-CL401

Identifier Type: -

Identifier Source: org_study_id

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