RecruitingNCT05813678

A Long-term, Post-marketing Safety Study of Palynziq in Patients With PKU (PALace)

A Multi-Center, Observational Study to Evaluate the Long-Term Safety of Subcutaneous Injections of Palynziq® (Pegvaliase) in Subjects With Phenylketonuria


Sponsor

BioMarin Pharmaceutical

Enrollment

450 participants

Start Date

Jun 6, 2022

Study Type

OBSERVATIONAL

Conditions

Summary

This is a 10-year multi-center, global, observational study to further characterize the safety profile of pegvaliase, including hypersensitivity reactions, long-term safety and tolerability, and the effectiveness of the additional risk minimization measures (aRMMs) (European Union (EU) only) in subjects receiving pegvaliase for the treatment of PKU. Subjects for whom a clinical decision has been made that they will receive pegvaliase to treat their PKU within 30 days following the date of enrollment (incident-users) or have previously started treatment with pegvaliase at the date of enrollment (prevalent-users) are eligible for participation in this study.


Eligibility

Inclusion Criteria3

  • Documented diagnosis of PKU per local standard of care
  • Currently receiving or planned to receive pegvaliase treatment within 30 days after the date of enrollment, including subjects who previously received pegvaliase as part of the clinical development program and have completed study participation.
  • Subject (or legally authorized representative) is willing and able to provide written informed consent after the nature of the study has been explained and prior to any data collection.

Exclusion Criteria4

  • Subject has any kind of disorder that, in the opinion of the investigator, may compromise the ability of the subject to give written informed consent and/or comply with any aspect of the study.
  • Currently participating in an interventional study of any investigational product, device, or procedure
  • Previously enrolled in this study (eg, subjects who have been withdrawn from the study and wish to participate again at a later date)
  • German subjects <16 years if age

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Interventions

DRUGPegvaliase

This is an uncontrolled, single-cohort, Phase 4 observational study not falling under the definition of an Applicable Clinical Trial (ACT) (i.e., non-interventional).


Locations(26)

University of Colorado

Aurora, Colorado, United States

Emory University

Atlanta, Georgia, United States

Northwestern University

Chicago, Illinois, United States

Indiana University School of Medicine

Indianapolis, Indiana, United States

Tulane University Medical Center

New Orleans, Louisiana, United States

Boston Children's Hospital

Boston, Massachusetts, United States

Oregon Health and Science University

Portland, Oregon, United States

University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, United States

Vanderbilt University Medical School

Nashville, Tennessee, United States

University of Texas Southwestern Medical Center

Dallas, Texas, United States

University of Utah

Salt Lake City, Utah, United States

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Hospital Carl-Thiem-Klinikum Cottbus

Cottbus, Germany

Universitaetsklinikum Hamburg Eppendorf

Hamburg, Germany

Universitaetslinikum Leipzig AoeR

Leipzig, Germany

Johannes Gutenberg University of Mainz

Mainz, Germany

Universitätsklinikum Münster (UKM)-Pädiatrische Universitätsklinik Münster

Münster, Germany

Universität Ulm

Ulm, Germany

Policlinico Sant'orsola Malpighi

Bologna, Italy

University Hospital Careggi

Florence, Italy

Ospedale San Paolo

Milan, Italy

Azienda Ospedaliera Universitaria "Federico II" Dipartimento di Pediatria

Naples, Italy

Azienda Ospedaliera di Padova

Padova, Italy

Azienda Ospedaliera Universitaria Policlinico Paolo Giaccone

Palermo, Italy

Policlinico Gemelli

Rome, Italy

Sapienza University of Rome Hospital

Rome, Italy

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NCT05813678


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