Phase 3 Study to Evaluate the Efficacy & Safety of Self-Administered Injections of BMN165 by Adults With PKU

NCT ID: NCT01889862

Last Updated: 2021-05-21

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

View full results

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

COMPLETED

Clinical Phase

PHASE3

Total Enrollment

215 participants

Study Classification

INTERVENTIONAL

Study Start Date

2013-07-29

Study Completion Date

2019-02-05

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

The BMN 165 clinical development program has been designed to demonstrate the safety and efficacy of BMN 165 in reducing blood Phe concentrations in adults with PKU.

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

165-302 is a Phase 3, 4 Part, Randomized, Double-Blind, Placebo-Controlled, Discontinuation Study to Evaluate the Efficacy and Safety of Self Administered Subcutaneous Injections of BMN 165 by Adults With PKU.

This study is open only to adults who have been exposed to BMN165 in a previous study.

Study BMN 165-302 is a four-Part, Phase 3 study.

* Part 1: Open-label period
* Part 2: A Randomized, double-blind, placebo-controlled period of 8 weeks
* Part 3: Two sub-Parts to Part 3:- Part 3A - BMN 165 administered using vial and syringe during this open label period. Part 3B - BMN 165 administered using prefilled syringe during this open-label period.
* Part 4: A long-term, open-label extension period.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Phenylketonuria (PKU)

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

TREATMENT

Blinding Strategy

TRIPLE

Participants Caregivers Investigators

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

BMN165 20mg/day

BMN165 20mg/day self-administered daily

Group Type ACTIVE_COMPARATOR

BMN165 20mg/day

Intervention Type DRUG

BMN165 20mg/day self-administered daily

20 mg/day Placebo

20 mg/day Placebo self-administered daily

Group Type PLACEBO_COMPARATOR

Placebo

Intervention Type DRUG

Non-drug placebo, self-administered daily

BMN165 40mg/day

BMN165 40mg/day self-administered daily

Group Type ACTIVE_COMPARATOR

BMN165 40mg/day

Intervention Type DRUG

BMN165 40mg/day self-administered daily

40 mg/day Placebo

40 mg/day Placebo self-administered daily

Group Type PLACEBO_COMPARATOR

Placebo

Intervention Type DRUG

Non-drug placebo, self-administered daily

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

BMN165 20mg/day

BMN165 20mg/day self-administered daily

Intervention Type DRUG

BMN165 40mg/day

BMN165 40mg/day self-administered daily

Intervention Type DRUG

Placebo

Non-drug placebo, self-administered daily

Intervention Type DRUG

Other Intervention Names

Discover alternative or legacy names that may be used to describe the listed interventions across different sources.

PEG-PAL PEG-PAL Dextran 40

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

Individuals eligible to participate in this study must meet all of the following criteria:

* Have completed a prior BMN 165 study (PAL-003, 165-205, or 165-301) prior to screening
* Have had a stable BMN 165 dose regimen for at least 14 days prior to screening
* Are at least 18 y/o and no older than 70 y/o at screening

* Subjects who are \< 18 y/o and are already enrolled into Study 165-301 under Amendment #1 (10JAN2014) may enroll into this study
* Has identified a person who is \> 18 y/o who has the neurocognitive and linguistic capacities to comprehend and complete the Profile of Mood States (POMS)-Observer rated scale
* Has identified a competent person(s) \> 18 y/o who can observe the subject during study drug administration at certain points in the study

* A home healthcare nurse may perform the study drug observations
* Are willing and able to provide written, signed informed consent after the nature of the study has been explained and prior to any research-related procedures; for minors, parent or guardian provides written consent and assent may be requested
* Are willing and able to comply with all study procedures
* For females of childbearing potential, a negative pregnancy test at screening and willing to have additional pregnancy tests during the study
* If sexually active, willing to use two acceptable methods of contraception during and for 4 weeks after the study

* Males post vasectomy for 2 years with no known pregnancies do not need to use any other forms of contraception during the study.
* Females who have been in menopause for at least 2 years, have had a tubal ligation at least 1 year prior to screening, or have had a total hysterectomy do not need to use any other forms of contraception during the study.
* Have received documented approval from a study dietitian confirming that the subject is capable of maintaining their diet
* Have neurocognitive and linguistic capacities to comprehend and answer investigator's prompts for the Attention Deficit Hyperactivity Disorder Rating Scale (ADHD-RS) Investigator rated instrument and to complete the POMS-Subject rated scale
* If applicable, maintained stable dose of medication for Attention Deficit Hyperactivity Disorder (ADHD), depression, anxiety, or other psychiatric disorder ≥8 weeks prior to enrollment and willing to maintain stable dose throughout study unless a change is medically indicated
* General good health, as evidenced by physical examination, clinical laboratory evaluations, and ECG tests at screening

Exclusion Criteria

* Use of any investigational product (except BMN 165) or investigational medical device within 30 days prior to screening or requirement for any investigational agent prior to completion of all scheduled study assessments
* Use of any medication (except BMN 165) intended to treat PKU, including the use of large neutral amino acids, within 2 days prior to the administration of study drug
* Have known hypersensitivity to Dextran® or components of Dextran
* Use or planned use of any injectable drugs containing PEG (except for BMN 165), including medroxyprogesterone injection, within 3 months prior to screening and during study participation
* Current use of levodopa
* A positive test for HIV antibody, hepatitis B surface antigen, or hepatitis C antibody
* A history of organ transplantation or taking chronic immunosuppressive therapy
* A history of substance abuse in the past 12 months or current alcohol or drug abuse
* Current participation in the Kuvan registry study (PKUDOS). Patients may discontinue the PKUDOS registry trial to allow enrollment in this study
* Pregnant or breastfeeding at screening or planning to become pregnant (self or partner) or breastfeed at any time during the study
* Concurrent disease or condition that would interfere with study participation or safety.
* Major surgery planned during the study period
* Any condition that in the view of the investigator, places the subject at high risk of poor treatment compliance or terminating early from the study
* Alanine aminotransferase (ALT) concentration at least 2x the upper limit of normal
* Creatinine at least 1.5x the upper limit of normal
Minimum Eligible Age

18 Years

Maximum Eligible Age

70 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

BioMarin Pharmaceutical

INDUSTRY

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Clinical Trial Specialist

Role: STUDY_DIRECTOR

BioMarin Pharmaceutical

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

University of California, San Diego Clinical and Translational Research Institute

La Jolla, California, United States

Site Status

UCSF Benioff Children's Hospital Oakland

Oakland, California, United States

Site Status

Children's Hospital Colorado

Aurora, Colorado, United States

Site Status

University of Florida Clinical Research Center

Gainesville, Florida, United States

Site Status

University of South Florida

Tampa, Florida, United States

Site Status

Emory Universty, Department of Human Genetics, Division of Medical Genetics

Atlanta, Georgia, United States

Site Status

Ann and Robert H Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status

Indiana CTSI Clinical Research Center

Indianapolis, Indiana, United States

Site Status

University of Kentucky Medical Center

Lexington, Kentucky, United States

Site Status

University of Louisville, Kosair Charities Pediatric Clinical Research Unit

Louisville, Kentucky, United States

Site Status

Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

Wayne State University Clinical Research Center at the Mott Center

Detroit, Michigan, United States

Site Status

University of Missouri Health Center

Columbia, Missouri, United States

Site Status

Washington University Center for Applied Research Sciences

St Louis, Missouri, United States

Site Status

University of Nebraska Medical Center

Omaha, Nebraska, United States

Site Status

Cooper Health Systems

Camden, New Jersey, United States

Site Status

Atlantic Health System - Morristown Medical Center

Morristown, New Jersey, United States

Site Status

Albany Medical Center

Albany, New York, United States

Site Status

Icahn School of Medicine at Mount Sinai Medical Center

New York, New York, United States

Site Status

University Hospitals Case Medical Center

Cleveland, Ohio, United States

Site Status

University of Oklahoma Health Sciences Center

Oklahoma City, Oklahoma, United States

Site Status

Oregon Health and Science University

Portland, Oregon, United States

Site Status

St. Christopher's Hospital for Children

Philadelphia, Pennsylvania, United States

Site Status

Children's Hospital of Pittsburgh, University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, United States

Site Status

Vanderbilt Children's Hospital

Nashville, Tennessee, United States

Site Status

University of Texas Houston Medical School

Houston, Texas, United States

Site Status

University of Utah Hospital

Salt Lake City, Utah, United States

Site Status

University of Washinton

Seattle, Washington, United States

Site Status

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status

Countries

Review the countries where the study has at least one active or historical site.

United States

References

Explore related publications, articles, or registry entries linked to this study.

Bilder DA, Arnold GL, Dimmock D, Grant ML, Janzen D, Longo N, Nguyen-Driver M, Jurecki E, Merilainen M, Amato G, Waisbren S. Improved attention linked to sustained phenylalanine reduction in adults with early-treated phenylketonuria. Am J Med Genet A. 2022 Mar;188(3):768-778. doi: 10.1002/ajmg.a.62574. Epub 2021 Nov 26.

Reference Type DERIVED
PMID: 34826353 (View on PubMed)

Related Links

Access external resources that provide additional context or updates about the study.

http://www.pku.com

BioMarin sponsored PKU educational/community website

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

165-302

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.

Gene Therapy Clinical Study in Adult PKU
NCT03952156 TERMINATED PHASE1/PHASE2
Phase I/IIa Trial of scAAV1.tMCK.NTF3 for Treatment of CMT1A
NCT03520751 NOT_YET_RECRUITING PHASE1/PHASE2
Evaluation of BH4 Responsiveness in Our PKU Patients
NCT07255599 ACTIVE_NOT_RECRUITING PHASE1