Actively Recruiting
FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
Led by xCures · Updated on 2024-11-14
1000
Participants Needed
1
Research Sites
104 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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
Official Title
FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Any person with a known or suspected rare disease affecting fewer than 200,000 individuals nationwide, including but not limited to Alpha- or Beta-Thalassemia, Amyloidosis, Amyotrophic Lateral Sclerosis, Creutzfeldt-Jakob Disease, Cystic Fibrosis, Duchenne Muscular Dystrophy, Early-onset Alzheimer's Disease, Ehlers-Danlos Syndrome, Huntington's Disease, Gaucher Disease, GM1 Gangliosidosis, Myasthenia Gravis, Pompe Disease, Sickle Cell Disease, Transthyretin Amyloid Cardiomyopathy, and Transthyretin Amyloid Polyneuropathy
- Patients or their legally authorized representative must be willing and able to provide informed consent (and assent, if applicable)
- Deceased persons may participate if consent is provided by their legally authorized representative according to applicable laws
You will not qualify if you...
- Patient or legally authorized representative is unable to provide informed consent
- Patient resides outside the United States and cannot provide access to medical records
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
xCures
Los Altos, California, United States, 94022
Actively Recruiting
Research Team
M
Mark Shapiro, MS
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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