NCT04552691

Brief Summary

The objective of this treatment protocol is to provide guidance to Treating Physicians who seek access to pegunigalsidase alfa for Fabry patients whose clinical condition, in the opinion of the Treating Physician, requires treatment with enzyme replacement therapy (ERT) with pegunigalsidase alfa and a) cannot be adequately treated with currently approved FDA products and/or b) are not able or willing to participate in any of the on-going clinical trials in the United States.

Trial Health

55
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Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Geographic Reach
1 country

11 active sites

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

September 11, 2020

Completed
6 days until next milestone

First Posted

Study publicly available on registry

September 17, 2020

Completed
Last Updated

July 31, 2024

Status Verified

July 1, 2024

First QC Date

September 11, 2020

Last Update Submit

July 30, 2024

Conditions

Keywords

Fabry DiseasePegunigalsidase alfa

Interventions

Pegunigalsidase alfa is a recombinant ERT (enzyme replacement therapy) used to treat Fabry disease (dosage: 1 mg/kg body weight every 2 weeks).

Eligibility Criteria

Age18 Years+
Sexall
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • In the opinion of the Treating Physician, the patient cannot be adequately treated with any FDA approved drugs for Fabry and is not able to enroll in any current clinical trial for Fabry disease.
  • Patient (or legal guardian) is able to sign an informed consent prior to treatment.
  • A documented diagnosis of Fabry disease.
  • Preferably two, but at minimum 1, historical serum creatinine evaluations in the last 2 years with the latest value within the last 6 months.
  • Female patients and male patients whose co-partners are of child-bearing potential agree to use a medically acceptable method of contraception, not including the rhythm method. Acceptable methods of contraception include hormonal products, intrauterine device, or male or female condoms. Contraception should be used for 90 days after treatment discontinuation.

You may not qualify if:

  • Patients enrolled and currently treated in Study PB-102-F20, and patients enrolled and currently treated in Extension Study PB-102-F60
  • Patients who currently are on treatment under any other ongoing clinical trials of PRX-102
  • History of Type 1 (anaphylaxis or anaphylactoid like) life-threatening hypersensitivity during previous exposure to other ERTs which could not be handled with medication
  • Women who are breastfeeding may not participate unless they agree to stop breastfeeding.
  • Women who are currently pregnant.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (11)

University of Alabama-Birmingham

Birmingham, Alabama, 35294, United States

Location

Phoenix Children's Hospital, Inc.

Phoenix, Arizona, 85006, United States

Location

University of California Irvine

Orange, California, 92868, United States

Location

Central Coas Nephrology

Salinas, California, 93901, United States

Location

University of Florida, Division of Pediatric Genetics

Jacksonville, Florida, 32207, United States

Location

Emory University School of Medicine

Atlanta, Georgia, 30322, United States

Location

University of Iowa

Iowa City, Iowa, 52242, United States

Location

Infusion Associates

Grand Rapids, Michigan, 49525, United States

Location

Dallas Nephrology Associates

Dallas, Texas, 75235-2208, United States

Location

University of Utah

Salt Lake City, Utah, 84108, United States

Location

Lysosomal & Rare Disorder Research & Treatment Center (LRDRTC)

Fairfax, Virginia, 22030, United States

Location

MeSH Terms

Conditions

Fabry Disease

Condition Hierarchy (Ancestors)

SphingolipidosesLysosomal Storage Diseases, Nervous SystemBrain Diseases, Metabolic, InbornBrain Diseases, MetabolicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesCerebral Small Vessel DiseasesCerebrovascular DisordersVascular DiseasesCardiovascular DiseasesGenetic Diseases, X-LinkedGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMetabolism, Inborn ErrorsLipidosesLipid Metabolism, Inborn ErrorsLysosomal Storage DiseasesMetabolic DiseasesNutritional and Metabolic DiseasesLipid Metabolism Disorders

Study Design

Study Type
expanded access
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 11, 2020

First Posted

September 17, 2020

Last Updated

July 31, 2024

Record last verified: 2024-07

Locations