RecruitingNCT06636383

Glycogen Storage Disease Type Ia (GSDIa) Disease Monitoring Program

GSDIa Disease Monitoring Program


Sponsor

Ultragenyx Pharmaceutical Inc

Enrollment

140 participants

Start Date

Nov 4, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

The main objective of this observational study is to evaluate the long-term safety and effectiveness of DTX401 for at least 10 years after DTX401 administration.


Eligibility

Min Age: 2 Years

Inclusion Criteria4

  • Patient who had:
  • DTX401 (full or partial dose) administered in a parent clinical study (Group 1) or
  • Prescribed DTX401(full or partial dose) administered in a post-marketing setting (Group 2)
  • Patient is willing and able to provide informed consent after the nature of the study has been explained, and prior to any research-related assessments or procedures. If a minor or an adult with cognitive limitations, the patient is willing and able (if possible) to provide assent and have a legally authorized representative provide informed consent after the nature of the study has been explained, and prior to any research-related assessments or procedures.

Exclusion Criteria1

  • Presence of any condition that would interfere with study participation, interpretation of results or affect patient's safety in the opinion of the Investigator

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Interventions

OTHERNo Intervention

No investigational/study product will be administered in this DMP.


Locations(19)

Children's Hospital of Orange County

Orange, California, United States

Children's Hospital Colorado

Denver, Colorado, United States

University of Connecticut Health Center

Hartford, Connecticut, United States

University of Michigan

Ann Arbor, Michigan, United States

Duke University Medical Center

Durham, North Carolina, United States

The Cleveland Clinic Foundation

Cleveland, Ohio, United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

University of Texas Health Science Center at Houston

Houston, Texas, United States

Primary Children's Hospital

Salt Lake City, Utah, United States

Hospital de Clinicas de Porto Alegre (HCPA) - PPDS

Porto Alegre, Rio Grande do Sul, Brazil

McGill University Health Center

Montreal, Quebec, Canada

Rigshospitalet

Copenhagen, Denmark

Universitätsklinikum Hamburg Eppendorf

Hamburg, Germany

University of Naples

Naples, Campania, Italy

Istituto G Gaslini Ospedale Pediatrico IRCCS

Genoa, Italy

Osaka City General Hospital

Osaka, Japan

Fujita Health University Hospital

Toyoake, Japan

Groningen University

Groningen, Provincie Groningen, Netherlands

Hospital Clínico Universitario de Santiago

Santiago, Spain

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NCT06636383


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