Status:
RECRUITING
Canadian Fabry Disease Initiative (CFDI) National Registry
Lead Sponsor:
Canadian Fabry Research Consortium
Collaborating Sponsors:
Nova Scotia Health Authority
Conditions:
Fabry Disease
Eligibility:
All Genders
5-85 years
Brief Summary
CFDI NATIONAL REGISTRY Fabry disease is a rare, inherited, genetic condition due to a deficiency of an enzyme called alpha-galactosidase A. This enzyme deficiency causes the small blood vessels to ac...
Detailed Description
CFDI NATIONAL REGISTRY: Canada-Wide Patient Recruitment There are over 600 people in Canada known to have Fabry Disease. For more details about Fabry Disease, please refer to the "Brief Summary." Th...
Eligibility Criteria
Inclusion
- INCLUSION CRITERIA:
- Age 5 years and older, up to \& including age 85 years; and
- Able to give informed consent; and
- A clinical diagnosis of Fabry disease; and
- Compliance with all the clinic visits, interviews and assessments during the study period; and
- A Canadian citizen or a landed immigrant
- EXCLUSION CRITERIA:
- Inability to give informed consent; or
- Problem complying with all the clinic visits, interviews and assessments during the study period; or
- An estimated life expectancy of less than 12 months
- Under 5 years of age
- Non-disease causing mutation
Exclusion
Key Trial Info
Start Date :
January 1 2007
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
October 1 2029
Estimated Enrollment :
600 Patients enrolled
Trial Details
Trial ID
NCT00455104
Start Date
January 1 2007
End Date
October 1 2029
Last Update
February 15 2024
Active Locations (5)
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1
Alberta Children's Hospital
Calgary, Alberta, Canada, T2T 5C7
2
Vancouver General Hospital Adult Metabolic Diseases Clinic
Vancouver, British Columbia, Canada, V5Z 1M9
3
Queen Elizabeth II Health Sciences Centre
Halifax, Nova Scotia, Canada, B3H 1V8
4
Toronto Western Hospital
Toronto, Ontario, Canada, M5T 2S8