RecruitingNCT03604835

Mucopolysaccharidosis VII Disease Monitoring Program

Mucopolysaccharidosis VII Disease Monitoring Program (MPS VII DMP)


Sponsor

Ultragenyx Pharmaceutical Inc

Enrollment

50 participants

Start Date

Jan 29, 2018

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Inclusion Criteria3

  • 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 Criteria1

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

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Interventions

OTHERNo Intervention

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


Locations(14)

Children's Hospital of Orange County

Orange, California, United States

Children's National Health System

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

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

Chicago, Illinois, United States

University of Michigan

Ann Arbor, Michigan, United States

New York University Langone Medical Center

New York, New York, United States

University of Utah Medical Center

Salt Lake City, Utah, United States

Seattle Children's Hospital

Seattle, Washington, United States

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

Buenos Aires, Argentina

Hospital de Clínicas de Porto Alegre

Porto Alegre, Rio Grande do Sul, Brazil

Centre Hospitalier Universitaire La Timone

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

Universitätsmedizin der Johannes Gutenberg-Universität Mainz

Mainz, Germany

Erasmus University Medical Center Rotterdam

Rotterdam, South Holland, Netherlands

Centro Hospitalar do Porto

Porto, Portugal

Hospital Universitario Virgen del Rocío Pabellón Infantil

Seville, Spain

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NCT03604835


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