Status:
RECRUITING
FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
Lead Sponsor:
xCures
Conditions:
Alpha-Thalassemia
Beta-Thalassemia
Eligibility:
All Genders
Brief 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 electroni...
Detailed Description
This study does not require data entry by treating site staff or physicians. Centralized data structuring is completed by xCures study staff. Data elements are aggregated, normalized, and coded to OMO...
Eligibility Criteria
Inclusion
- 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) Cystic Fibrosis (CF) Duchenne Muscular Dystrophy (DMD) Early-onset Alzheimer's Disease Ehlers-Danlos Syndrome (EDS) Huntington's Disease (HD) Gaucher Disease GM1 Gangliosidosis Myasthenia Gravis Pompe Disease Sickle Cell Disease Transthyretin Amyloid Cardiomyopathy (ATTR-CM) Transthyretin Amyloid Polyneuropathy (ATTR-PN)
- \- Patients or their legally-authorized representative must be willing and able to provide informed consent (and assent, if applicable). Deceased persons may participate via consent of their legally-authorized representative in accordance with applicable Federal and state laws
Exclusion
- Patient or LAR is unable to provide informed consent.
- Patient resides in a country other than the United States and is unable to provide access to medical records.
Key Trial Info
Start Date :
June 10 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
June 10 2026
Estimated Enrollment :
1000 Patients enrolled
Trial Details
Trial ID
NCT06539169
Start Date
June 10 2024
End Date
June 10 2026
Last Update
November 14 2024
Active Locations (1)
Enter a location and click search to find clinical trials sorted by distance.
1
xCures
Los Altos, California, United States, 94022