NCT00484991

Brief Summary

The Purpose of this study is to provide patients with hyperphenylalaninemia (HPA) due to Phenylketonuria (PKU) access to sapropterin dihydrochloride and to collect more information about the safety of the drug in an expanded access program (EAP) until commercial product is available.

Trial Health

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Monitor

Trial Health Score

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

Geographic Reach
1 country

36 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

June 8, 2007

Completed
4 days until next milestone

First Posted

Study publicly available on registry

June 12, 2007

Completed
Last Updated

April 15, 2008

Status Verified

April 1, 2008

First QC Date

June 8, 2007

Last Update Submit

April 11, 2008

Conditions

Keywords

PhenylketonuriaPKUPhenylketonuriasHyperphenylalaninaemiaHydroxylase Deficiency

Interventions

20mg/kg/day orally, physicians may adjust the dose within a range of 5-20mg/kg/day as warranted by their clinical judgment.

Also known as: Kuvan, Phenoptin

Eligibility Criteria

Age9 Years+
Sexall
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Patient has hyperphenylalaninemia due to PKU, a rare and serious disease
  • Patient is not participating in a sapropterin dihydrochloride clinical study
  • Patient is older than 8 years of age
  • Patient is willing and able to provide written informed consent or, in the case of under the age of 18, provide written assent (if required) and written informed consent by a parent or legal guardian
  • If female and of child bearing potential, the patient has a negative urine pregnancy test within 24 hours prior to enrollment (females of child-bearing potential only) and will be using adequate contraceptive methods to avoid pregnancy while participating in the program
  • Patient is willing and able to comply with program procedures
  • Patient lives in the United States

You may not qualify if:

  • Patient is perceived to be unreliable or unwilling to comply with program participation or, if under the age of 18, have parents or legal guardians who are perceived to be unreliable or unwilling to comply with program participation
  • Patient has a concurrent disease or condition that would interfere with program participation or safety
  • Patient is 8 years old or younger
  • Patients is eligible for enrolling in PKU-010
  • Patient is participating in an ongoing study with sapropterin dihydrochloride
  • Patient is pregnant, breast feeding or considering pregnancy
  • Patient is taking levodopa

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (36)

Unknown Facility

Los Angeles, California, United States

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Orange, California, United States

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San Diego, California, United States

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Stanford, California, United States

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Denver, Colorado, United States

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Gainseville, Florida, United States

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Tampa, Florida, United States

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Chicago, Illinois, United States

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Indianapolis, Indiana, United States

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Louisville, Kentucky, United States

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New Orleans, Louisiana, United States

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Bangor, Maine, United States

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Boston, Massachusetts, United States

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Minneapolis, Minnesota, United States

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Columbia, Missouri, United States

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Kansas City, Missouri, United States

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St Louis, Missouri, United States

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Newark, New Jersey, United States

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Manhasset, New York, United States

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Rochester, New York, United States

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Stony Brook, New York, United States

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Valhalla, New York, United States

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Akron, Ohio, United States

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Columbus, Ohio, United States

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Hershey, Pennsylvania, United States

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Philadelphia, Pennsylvania, United States

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Pittsburgh, Pennsylvania, United States

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Florence, South Carolina, United States

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Sioux Falls, South Dakota, United States

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Galveston, Texas, United States

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Houston, Texas, United States

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Salt Lake City, Utah, United States

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Charlottesville, Virginia, United States

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Norfolk, Virginia, United States

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Madison, Wisconsin, United States

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Milwakee, Wisconsin, United States

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MeSH Terms

Conditions

Phenylketonurias

Interventions

sapropterinphenoptin

Condition Hierarchy (Ancestors)

Brain Diseases, Metabolic, InbornBrain Diseases, MetabolicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesAmino Acid Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMetabolic DiseasesNutritional and Metabolic Diseases

Study Design

Study Type
expanded access
Sponsor Type
INDUSTRY

Study Record Dates

First Submitted

June 8, 2007

First Posted

June 12, 2007

Last Updated

April 15, 2008

Record last verified: 2008-04

Locations