Status:
COMPLETED
Verification of the Epidemiology and Mortality of Rare Diseases in Taiwan With Real-world Evidence
Lead Sponsor:
National Cheng-Kung University Hospital
Conditions:
Rare Diseases
Epidemiology
Eligibility:
All Genders
Brief Summary
This study aims to explore the longitudinal incidence and prevalence trends of selected muscular and bone-related rare diseases, i.e., Familial Amyloidotic Polyneuropathy (FAP), Primary hyperoxaluria,...
Detailed Description
A rare disease (RD) means any disease that affects a small percentage of the population. According to the "Rare Disease and Orphan Drug Act" in 2000, RD is defined as the prevalence of lower than 10,0...
Eligibility Criteria
Inclusion
- The RD patients were defined as at least two ambulatory care records or one inpatient record in one year with Familial Amyloidotic Polyneuropathy (FAP), Osteogenesis imperfecta, and Acute Hepatic Porphyria between 2009 and 2017.
Exclusion
- The RD patients were diagnosed with Familial Amyloidotic Polyneuropathy (FAP), Osteogenesis imperfecta, and Acute Hepatic Porphyria before 2009.
Key Trial Info
Start Date :
December 9 2020
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
April 30 2022
Estimated Enrollment :
5000 Patients enrolled
Trial Details
Trial ID
NCT05367115
Start Date
December 9 2020
End Date
April 30 2022
Last Update
April 4 2023
Active Locations (1)
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1
Department of Family Medicine, National Cheng Kung Univ Hosp
Tainan, Taiwan