Trials / Terminated
TerminatedNCT04812106
Long-Chain Fatty Acid Oxidation Disorders Online Disease Monitoring Program
Long Chain Fatty Acid Oxidation Disorders (LC-FAOD) Online Disease Monitoring Program (DMP)
- Status
- Terminated
- Phase
- —
- Study type
- Observational
- Enrollment
- 8 (actual)
- Sponsor
- Ultragenyx Pharmaceutical Inc · Industry
- Sex
- All
- Age
- —
- Healthy volunteers
- Not accepted
Summary
The objectives of this study are to characterize the disease impact, the disease management and resource utilization, and provide benefits to the LC-FAOD community, by use of a convenient online platform for participants (or caregivers) to self-report information.
Detailed description
The online LC-FAOD DMP is a non-interventional, prospective, observational disease-monitoring program conducted through a mobile/web-based application developed by the Sponsor. Participant data will be captured via the mobile/web-based application and entered into the database designed and maintained by the Sponsor and/or its designee. Additional objectives of the study are to benefit the LC-FAOD community by developing a comprehensive database for use by the LC-FAOD community to characterize patient experience, inform disease management, and enable further research, utilize the digital platform to notify patients, caregivers, and relevant patient advocacy groups of research studies and clinical trials and share aggregated and de-identified outputs to facilitate the exchange of information with patients and/or caregivers. Participants can be on any treatment in order to participate. Medical management of the disease should continue as directed by the patient's physician(s). Specifically, no treatments, investigational agents, or experimental interventions will be provided as part of this online LC-FAOD DMP.
Conditions
Interventions
| Type | Name | Description |
|---|---|---|
| OTHER | No Intervention | No Intervention |
Timeline
- Start date
- 2022-07-25
- Primary completion
- 2022-10-27
- Completion
- 2022-10-27
- First posted
- 2021-03-23
- Last updated
- 2022-11-18
Locations
1 site across 1 country: United States
Source: ClinicalTrials.gov record NCT04812106. Inclusion in this directory is not an endorsement.