Long-Chain Fatty Acid Oxidation Disorders In-Clinic Disease Monitoring Program

NCT ID: NCT04632953

Last Updated: 2025-12-02

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Total Enrollment

150 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-11-30

Study Completion Date

2035-12-31

Brief Summary

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The primary objective of this study is to assess the long-term safety, including pregnancy, infant, and lactation outcomes, of patients with LC-FAOD who are enrolled in the DMP.

Detailed Description

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The LC-FAOD Disease Monitoring Program (DMP) is an international, long-term, retrospective and prospective outcomes study aiming to collect safety and effectiveness data for triheptanoin and the natural history of LC-FAOD for a study duration of up to 10 years from adult and pediatric patients with LC-FAOD, with any previous disease management, regardless of prior treatment with triheptanoin, those who have previously participated in triheptanoin clinical trials, and those who received triheptanoin through an Expanded Access Program (EAP).

Patients enrolling in the LC-FAOD DMP will be managed at the discretion of their physicians and may or may not be treated with triheptanoin during the course of the study. Patients will have access to triheptanoin only through authorized commercial use (if approved in their country) or available EAP but not from the LC-FAOD DMP itself.

Conditions

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Long-chain Fatty Acid Oxidation Disorders (LC-FAOD)

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Cohort 1: Previously Treated with Triheptanoin

Patients who have been previously treated with triheptanoin in clinical studies: UX007-CL201 (NCT01886378), UX007-CL202 (NCT02214160), UX007-CL302 (2022-001539-10), Investigator Sponsored Trials (ISTs), or UX007-EAP (NCT03773770).

No Intervention

Intervention Type OTHER

No Intervention

Cohort 2: Currently or Previously Treated with Triheptanoin

New patients enrolling into the DMP currently or previously treated with triheptanoin (excluding those in Cohort 1).

No Intervention

Intervention Type OTHER

No Intervention

Cohort 3: Triheptanoin Naïve

New patients enrolling into the DMP with no exposure to triheptanoin (naïve).

No Intervention

Intervention Type OTHER

No Intervention

Interventions

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No Intervention

No Intervention

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Confirmed diagnosis of any LC-FAOD subtype. Diagnosis must be confirmed by results of acylcarnitine profiles and/or genetic testing results obtained from medical records or equivalent documentation.
* Willing and able to comply with all study procedures.
* Willing and able to provide consent or, if a minor, provide assent and informed consent by their legally authorized representative.
* Females of childbearing potential who become pregnant during the study will be invited to remain in the study. Pregnant females with LC-FAOD will be informed of the study and invited to enroll.

Exclusion Criteria

* Presence of a concurrent disease or condition that would interfere with study participation or affect patient's safety in the opinion of the Investigator.
* Presence or history of any condition that, in the view of the Investigator, places the patient at high risk of not completing the study or would affect the interpretation of study results.
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Ultragenyx Pharmaceutical Inc

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Director

Role: STUDY_DIRECTOR

Ultragenyx Pharmaceutical Inc

Locations

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Phoenix Children's Hospital

Phoenix, Arizona, United States

Site Status

University of California San Francisco

San Francisco, California, United States

Site Status

Children's Hospital of Colorado

Aurora, Colorado, United States

Site Status

University of South Florida

Tampa, Florida, United States

Site Status

The Emory Clinic

Atlanta, Georgia, United States

Site Status

Ann & Robert H. Lurie Children's Hospital

Chicago, Illinois, United States

Site Status

Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

University of Minnesota

Minneapolis, Minnesota, United States

Site Status

Columbia University

New York, New York, United States

Site Status

Nationwide Children's Hospital

Columbus, Ohio, United States

Site Status

Children's Hospital of Pittsburgh of UPMC

Pittsburgh, Pennsylvania, United States

Site Status

University of Utah

Salt Lake City, Utah, United States

Site Status

Seattle Children's Hospital

Seattle, Washington, United States

Site Status

University of Alberta

Edmonton, Alberta, Canada

Site Status

CHEO (Children's Hospital Eastern Ontario)

Ottawa, Ontario, Canada

Site Status

SickKids (The Hospital for Sick Children)

Toronto, Ontario, Canada

Site Status

Countries

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United States Canada

Related Links

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Other Identifiers

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UX007-CL401

Identifier Type: -

Identifier Source: org_study_id

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