FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
Recruiting
Observational Study
Alpha-Thalassemia
Beta-Thalassemia
Amyloidosis
Amyotrophic Lateral Sclerosis
Creutzfeld-Jakob Disease
Cystic Fibrosis
Duchenne Muscular Dystrophy
Early-Onset Alzheimer Disease
Ehlers-Danlos Syndrome
Huntington Disease
Gaucher Disease
GM1 Gangliosidosis
Myasthenia Gravis
Pompe Disease
Sickle Cell Disease
Transthyretin Amyloid Cardiomyopathy
Rare Diseases
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 1,000 (estimated)
- Sponsor
- xCures · Industry
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About This Trial
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…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Any person with a known or suspected rare disease, defined by their prevalence of fewer than 200,000 individuals nationwide. Diseases include but are not limited to:
Alpha- or Beta- Thalassemia Amyloidosis Amyotrophic Lateral Sclerosis (ALS) Creutzfeldt-Jakob disease (CJD) Cy…
Contacts