Actively Recruiting

All Genders
NCT03604835

Mucopolysaccharidosis VII Disease Monitoring Program

Led by Ultragenyx Pharmaceutical Inc · Updated on 2026-04-15

50

Participants Needed

14

Research Sites

795 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

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.

CONDITIONS

Official Title

Mucopolysaccharidosis VII Disease Monitoring Program

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Diagnosis of MPS VII based on laboratory diagnosis, including either enzymatic or mutation analysis.
  • Willing and able to provide written informed consent or, for patients under 18 or those over 18 with cognitive deficiencies, provide written assent (if required) and consent by a legally authorized representative.
  • Willing to comply with the Disease Monitoring Program visit schedule.
Not Eligible

You will not qualify if you...

  • Concurrent participation in other pharmaceutical company-sponsored interventional clinical trials unless approved by Ultragenyx.

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 14 locations

1

Children's Hospital of Orange County

Orange, California, United States, 92868

Actively Recruiting

2

Children's National Health System

Washington D.C., District of Columbia, United States, 20010

Actively Recruiting

3

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

Chicago, Illinois, United States, 60611

Actively Recruiting

4

University of Michigan

Ann Arbor, Michigan, United States, 48109

Actively Recruiting

5

New York University Langone Medical Center

New York, New York, United States, 10016

Terminated

6

University of Utah Medical Center

Salt Lake City, Utah, United States, 84112

Actively Recruiting

7

Seattle Children's Hospital

Seattle, Washington, United States, 98105

Actively Recruiting

8

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

Buenos Aires, Argentina, C1425FNG

Actively Recruiting

9

Hospital de Clínicas de Porto Alegre

Porto Alegre, Rio Grande do Sul, Brazil, 90035-003

Actively Recruiting

10

Centre Hospitalier Universitaire La Timone

Marseille, Provence-Alpes-Côte d'Azur Region, France, 13005

Actively Recruiting

11

Universitätsmedizin der Johannes Gutenberg-Universität Mainz

Mainz, Germany, 55131

Actively Recruiting

12

Erasmus University Medical Center Rotterdam

Rotterdam, South Holland, Netherlands, 3015 CN

Terminated

13

Centro Hospitalar do Porto

Porto, Portugal, 4050-651

Actively Recruiting

14

Hospital Universitario Virgen del Rocío Pabellón Infantil

Seville, Spain, 41013

Actively Recruiting

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Research Team

P

Patients Contact: Trial Recruitment

CONTACT

H

HCPs Contact: Medical Information

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

2

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Mucopolysaccharidosis VII Disease Monitoring Program | DecenTrialz