Long-Chain Fatty Acid Oxidation Disorders In-Clinic Disease Monitoring Program
Active, not recruiting · NCT04632953
Conditions: Long-chain Fatty Acid Oxidation Disorders (LC-FAOD)
At a glance
- Research payments reported, 2025
- $599,732
- U.S. investigators named
- 13
- Sites paid
- 13
- Planned or actual enrollment
- 150
About the trial
- Sponsor
- Ultragenyx Pharmaceutical Inc
- Tested
- No Intervention (other)
- Dates
- Started 2021-11-30; completion 2035-12
- Results posted
- Not yet
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.
From ClinicalTrials.gov, last updated 2026-06-03. Full record, eligibility and contacts (opens in a new tab)
Industry funding
Ultragenyx Pharmaceutical Inc. reported $599,732 in research payments for this study in 2025 (108 payments).
Research payments usually go to hospitals, universities and research sites to run a study, not to the investigators personally. A payment is not evidence of wrongdoing.
U.S. investigators named on this study
- Jasmine L. Knoll, M.D. Medical Genetics · Phoenix, AZ
- Irene J. Chang, M.D. Medical Genetics · San Francisco, CA
- Nicola Longo, MD Medical Genetics · Los Angeles, CA
- Peter R. Baker II, MD Medical Genetics · Aurora, CO
- Amarilis Sanchez-valle, M.D. Medical Genetics · Tampa, FL
- Michael J. Gambello, MD, PHD Medical Genetics · Decatur, GA
- Barbara K. Burton, MD Medical Genetics · Chicago, IL
- Amy M. Kritzer, MD Medical Genetics · Boston, MA
- Anjali Aggarwal Medical Genetics · Minneapolis, MN
- Teresa M. Lee, MD Pediatric Cardiology · New York, NY
- April N. Lehman, MD Medical Genetics · Columbus, OH
- Gerard Vockley, MD, PHD Specialist · Pittsburgh, PA
- Terry L. Kho, MD Medical Genetics · Seattle, WA
Clinicians the company named as principal investigators in its Open Payments reports.
Sites paid to run it
- University of Pittsburgh Physicians $163,441
- University of South Florida $105,240
- Ann & Robert H Lurie Childrens Hospital of Chicago, IL $56,983
- Emory University Hospital, GA $52,670
- University of Minnesota Children's Hosp $51,416
- UCSF Langley Porter Psychiatric Hospital and Clinics, CA $40,296
- Children's Hospital Colorado, CO $39,273
- University of Utah Hospital and Clinics, UT $25,560
- Seattle Children's Hospital, WA $25,547
- The Trustees of Columbia University $21,773
- Boston Children's Hospital, MA $13,975
- The Research Institute at Nationwide Childrens Hospital $1,808
- Phoenix Children's Hospital, AZ $1,750
Sources: CMS Open Payments research payments (program year 2025) and ClinicalTrials.gov, U.S. National Library of Medicine.