PhenylketonuriaNCT00484991
Sapropterin Expanded Access Program
A study testing Sapropterin dihydrochloride in people with Phenylketonuria, run by BioMarin Pharmaceutical at 36 sites in United States.
Trial 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. Read more about this study
- Who is it for?
- Ages 9 years and older
- Conditions the study is for
- Phenylketonuria
- What is being tested?
- Sapropterin dihydrochloride
- Type of treatment
- Pill or oral medicine
- How many people
- Not given
- Where
- 36 sitesUnited States
- Study dates
- Start not givento not given
- Phase
- Expanded access
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 9 years and older
- All sexes
- Child, Adult, Older adult
Who may be able to join
- 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
Who cannot join
- 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
Trial locations and contacts
36 sites in 1 country.
36 sites in 1 country
United States36 sites
Study site
Akron, Ohio
Study site
Bangor, Maine
Study site
Boston, Massachusetts
Study site
Charlottesville, Virginia
Study site
Chicago, Illinois
Study site
Columbia, Missouri
Study site
Columbus, Ohio
Study site
Denver, Colorado
Study site
Florence, South Carolina
Study site
Gainseville, Florida
Study site
Galveston, Texas
Study site
Hershey, Pennsylvania
Study site
Houston, Texas
Study site
Indianapolis, Indiana
Study site
Kansas City, Missouri
Study site
Los Angeles, California
Study site
Louisville, Kentucky
Study site
Madison, Wisconsin
Study site
Manhasset, New York
Study site
Milwakee, Wisconsin
Study site
Minneapolis, Minnesota
Study site
New Orleans, Louisiana
Study site
Newark, New Jersey
Study site
Norfolk, Virginia
Study site
Orange, California
Study site
Philadelphia, Pennsylvania
Study site
Pittsburgh, Pennsylvania
Study site
Rochester, New York
Study site
Salt Lake City, Utah
Study site
San Diego, California
Study site
Sioux Falls, South Dakota
Study site
St Louis, Missouri
Study site
Stanford, California
Study site
Stony Brook, New York
Study site
Tampa, Florida
Study site
Valhalla, New York
About this study
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.
Read the detailed description
The sapropterin EAP (SEAP) is an open-label, multi-center program designed to provide access to sapropterin dihydrochloride for patients diagnosed with hyperphenylalaninemia due to PKU. All patients with a confirmed diagnosis of hyperphenylalaninemia due to PKU who are not currently enrolled in a clinical study with sapropterin dihydrochloride and meet the requisite inclusion criteria and do not meet any of the exclusion criteria may be eligible to participate in this program. Eligible patients may receive sapropterin dihydrochloride and participate in the program until commercial drug is available, however, the program will not continue beyond 2 months after the product receives marketing approval from the FDA. During the program, physicians will use their clinical judgment to assess whether a patient is a responder to sapropterin dihydrochloride. Participating physicians will measure blood Phe levels at baseline prior to treatment and then at least once between Day 7 and Day 30 following initiation of treatment to determine if the patient is a responder. A responder is a patient that has a clinically significant reduction in either the absolute or percent decrease in blood phenylalanine level compared to pre-treatment levels. The recommended starting dose of sapropterin dihydrochloride is 20 mg/kg/day. Physicians treating their patients with sapropterin dihydrochloride will be able to adjust the dose within a range of 5 mg/kg/day to 20 mg/kg/day if warranted in their clinical judgment. Adverse event information will be collected in an ongoing fashion through patient reporting AEs to their physician. Physicians will ask patients for information regarding adverse events that have occurred since the last visit. An adverse event report form will be completed in these cases and sent to BioMarin.
- Conditions
- Phenylketonuria
- Being tested
- Sapropterin dihydrochloride
- Keywords
- Phenylketonuria, PKU, Phenylketonurias, Hyperphenylalaninaemia, Hydroxylase Deficiency
- Medical subject headings
- Phenylketonurias
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Sapropterin dihydrochlorideDrug
Also called Kuvan, Phenoptin
20mg/kg/day orally, physicians may adjust the dose within a range of 5-20mg/kg/day as warranted by their clinical judgment.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted12 Jun 2007 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for PhenylketonuriaStudies of the same condition, open and under way.
- More trials run by BioMarin PharmaceuticalThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Expanded access
Sponsor and investigators
- Lead sponsor
- BioMarin Pharmaceutical
- Sponsor type
- Industry (pharma, biotech, devices)
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00484991
- Sponsor's protocol ID
- SEAP-001
- Status last verified
- Apr 2008
- First submitted
- 8 Jun 2007
- Last updated
- 15 Apr 2008
- Results posted
- No
Study at a glance
From the registry record, last updated by the sponsor on 15 Apr 2008. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Sapropterin Expanded Access Program
- ClinicalTrials.gov ID
- NCT00484991
- Acronym / sponsor ID
- SEAP-001
- Conditions
- Phenylketonuria
- Keywords
- Phenylketonuria, PKU, Phenylketonurias, Hyperphenylalaninaemia, Hydroxylase Deficiency
- Study type
- Expanded access
- Recruitment status
- Approved For Marketing
- Lead sponsor
- BioMarin PharmaceuticalIndustry (pharma, biotech, devices)
- First posted
- 12 Jun 2007 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
The sapropterin EAP (SEAP) is an open-label, multi-center program designed to provide access to sapropterin dihydrochloride for patients diagnosed with hyperphenylalaninemia due to PKU. All patients with a confirmed diagnosis of hyperphenylalaninemia due to PKU who are not currently enrolled in a clinical study with sapropterin dihydrochloride and meet the requisite inclusion criteria and do not meet any of the exclusion criteria may be eligible to participate in this program. Eligible patients may receive sapropterin dihydrochloride and participate in the program until commercial drug is available, however, the program will not continue beyond 2 months after the product receives marketing approval from the FDA. During the program, physicians will use their clinical judgment to assess whether a patient is a responder to sapropterin dihydrochloride. Participating physicians will measure blood Phe levels at baseline prior to treatment and then at least once between Day 7 and Day 30 following initiation of treatment to determine if the patient is a responder. A responder is a patient that has a clinically significant reduction in either the absolute or percent decrease in blood phenylalanine level compared to pre-treatment levels. The recommended starting dose of sapropterin dihydrochloride is 20 mg/kg/day. Physicians treating their patients with sapropterin dihydrochloride will be able to adjust the dose within a range of 5 mg/kg/day to 20 mg/kg/day if warranted in their clinical judgment. Adverse event information will be collected in an ongoing fashion through patient reporting AEs to their physician. Physicians will ask patients for information regarding adverse events that have occurred since the last visit. An adverse event report form will be completed in these cases and sent to BioMarin.
Study design
Who may qualify
- Ages
- 9 years and older
- Sex
- All
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (7 listed)
- 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
Key exclusion criteria (7 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Sapropterin dihydrochlorideAlso: Kuvan, Phenoptin20mg/kg/day orally, physicians may adjust the dose within a range of 5-20mg/kg/day as warranted by their clinical judgment. | Drug | – |
Primary outcome
Not reported in the source record.
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 15 Apr 2008.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
36 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Sapropterin dihydrochloride in people with Phenylketonuria, run by BioMarin Pharmaceutical at 36 sites in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 7 inclusion and 7 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: status not confirmed, as of the sponsor's last update on 15 Apr 2008. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 36 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 15 Apr 2008.