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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: Recruiting study of Cystic Fibrosis and Amyotrophic Lateral Sclerosis, sponsored by xCures.

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. According to ClinicalTrials.gov, the official US trial registry.

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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.

Study Locations (1)

California

  • xCures - Los Altos

Trial Details

FieldValue
Enrollment Target 1,000 participants
Start Date 2024-06-10
Est. Completion 2026-06-10
xCures

4 total trials

What NCT06539169 shows while recruiting

NCT06539169 is an observational study that tracks outcomes without assigning an intervention. Its 1,000 participants enrollment target places it among the larger protocols in the corpus, above the 173-participant average among 169 other Cystic Fibrosis trials with a reported enrollment target (478% higher).

The record links to 10 conditions, with Cystic Fibrosis appearing as the primary indexed condition, and to 0 interventions.

NCT06539169 reports a single indexed study location in 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.

Similar trials for Cystic Fibrosis

Matched on the same primary condition, ranked to surface studies in the same phase first, then by recruiting status, no relevance scoring or editorial curation.

Where NCT06539169's enrollment target sits among peer trials

1,000 3rd of 169 higher than 167 of 169 other Cystic Fibrosis trials

participants (enrollment target), bucketed by value

Each bar is a band; taller bars hold more other Cystic Fibrosis trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.

Source ClinicalTrials.gov registry export · 2026-08-08

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Cross-condition peers matched on enrollment target and registry start date, not the same-condition list above.

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Source: ClinicalTrials.gov NCT06539169, the US trial registry maintained by the National Library of Medicine. NCT06539169 (large enrollment · single site footprint · recruiting) retrieved and formatted by PlainTrial, see methodology.