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Study identifier: NCT06539169 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases

Condition: Alpha-Thalassemia · Beta-Thalassemia · Amyloidosis  ·  Sponsor: xCures

PhaseN/A
Planned participants1000
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Mark Shapiro, MS  ·  707-641-4475  ·  expandedaccess@xcures.com

Always discuss trial participation with your own doctor first.

Locations (1)

xCuresLos Altos, California, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT06539169