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NCT06539169 · ClinicalTrials.gov registry record
FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
A clinical trial of Cystic Fibrosis and Amyotrophic Lateral Sclerosis, sponsored by xCures.
- Recruiting
- Registry status
- 1,000
- Enrollment target
- 1
- Study location
NCT06539169 is a study of Cystic Fibrosis and Amyotrophic Lateral Sclerosis that is actively recruiting participants, run by xCures. The registered enrollment target is 1,000 participants, above the 173-participant average among 169 other Cystic Fibrosis trials with a reported enrollment target (478% higher). The trial reports 1 study location across 1 state.
The verdict
NCT06539169, a study of Cystic Fibrosis and Amyotrophic Lateral Sclerosis, is actively recruiting participants, sponsored by xCures.
- RECRUITING
- Registry status
- 1,000 participants
- Enrollment target
- 1
- Study location
Study Summary
FLOWER is a completely virtual, nationwide, real-world observational study to collect, annotate, standardize, and report clinical data for rare diseases. Patients participate in the study by electronic consent (eConsent) and sign a medical records release to permit data collection. Medical records are accessed from institutions directly via eFax or paper fax, online from patient electronic medical record (EMR) portals, direct from DNA/RNA sequencing and molecular profiling vendors, and via electronic health information exchanges. Patients and their treating physicians may also optionally provide medical records. Medical records are received in or converted to electronic/digitized formats (CCDA, FHIR, PDF), sorted by medical record type (clinic visit, in-patient hospital, out-patient clinic, infusion and out-patient pharmacies, etc.) and made machine-readable to support data annotation, full text searches, and natural language processing (NLP) algorithms to further facilitate feature identification.
Conditions Studied
Study Locations (1)
California
- xCures - Los Altos
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 1,000 participants |
| Start Date | 2024-06-10 |
| Est. Completion | 2026-06-10 |
Interested in This Trial?
Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT06539169
The ClinicalTrials.gov registry entry for NCT06539169 describes a study currently listed as recruiting, categorized as an unspecified phase. The registered enrollment target is 1,000 participants, a figure that helps gauge the scale of data the investigators plan to collect, above the 173-participant average among 169 other Cystic Fibrosis trials with a reported enrollment target (478% higher). The listed sponsor is xCures, which has 4 total studies on file at ClinicalTrials.gov.
The record links to 10 conditions, with Cystic Fibrosis appearing as the primary indexed condition, and to 0 interventions.
NCT06539169 reports 1 study location spanning 1 distinct geographic area - top geographies include California.
Frequently Asked Questions
What is clinical trial NCT06539169 about?
NCT06539169 is a clinical study titled "FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases". FLOWER is a completely virtual, nationwide, real-world observational study to collect, annotate, standardize, and report clinical data for rare diseases. Patients participate in the study by electronic consent (eConsent) and sign a medical records release to permit data collection. Medical records a...
What is the current status of trial NCT06539169?
This trial is currently recruiting. The enrollment target is 1,000 participants. The study started on 2024-06-10. Estimated completion is 2026-06-10.
What conditions does trial NCT06539169 study?
This clinical trial studies the following conditions: Cystic Fibrosis, Amyotrophic Lateral Sclerosis, Duchenne Muscular Dystrophy, Huntington Disease, Amyloidosis.
Who is sponsoring clinical trial NCT06539169?
This trial is sponsored by xCures, which has 4 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT06539169 being conducted?
This trial has 1 study location across California. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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Related
Every figure on PlainTrial is rendered directly from the ClinicalTrials.gov registry, no number is typed in by an editor. This page mirrors this trial's own ClinicalTrials.gov registry record, live from the dataset. See our editorial standards & corrections policy, the methodology behind these numbers, or report a data error.