FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases

Part of paid clinical trials in Los Altos, California.

Sponsor
xCures
Study ID
NCT06539169
Status
Recruiting
Apply to this trial

Conditions

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Jun 10, 2024
Status verified
Aug 2024
Primary completion
Jun 10, 2026
Completion
Jun 10, 2026

Study Design

Enrollment
1,000 participants (estimated)

Primary Outcome Measure

Overall Survival (OS) [ Time Frame: 5 Years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
xCuresLos AltosCalifornia94022
Mark Shapiro
[email protected]
707-641-4475

Find similar trials in Los Altos, CA

By condition
Duchenne muscular dystrophyAlzheimer's diseaseHuntington diseaseSickle cell disease
By specialty
PediatricsNeurologyDementia careBrain disordersGeriatrics
By research site
xCures· Los Altos, CA

Related Studies