CASCADE FH Registry – Clinical
The FH Foundation’s CASCADE FH® Registry is the only active national FH patient registry.
The CASCADE FH Registry is a longitudinal observational study reaching the vastly under-diagnosed and under-served population of individuals with FH in conjunction with healthcare providers and academic institutions to Improve outcomes through research. It serves as a key Instrument in supporting health service planning and data analysis for epidemiological, clinical and outcomes research.
5000
TOTAL ENROLLED
40 clinical sites
The FH Foundation has designed the CASCADE FH Registry as an innovative hybrid Initiative to maximize reach and data collection. Data is collected from both clinicians and patients. The registry clinical sites are made up of lipid centers across the US.These lipid clinics enter baseline and follow-up data on demographic, laboratory value, treatment, and clinical events.
Main Objectives
- Identify and enroll FH patients through clinic-based, community-based, and family-based screening initiatives to track therapy, patient-reported outcome, and clinical outcomes overtime.
- Evaluate patterns of real world clinical practice and patient experiences to contribute to the state of scientific knowledge about FH diagnosis and management, quality of life and long-term health outcomes.
- Maximize the adherence to guideline-recommended lipid lowering treatments for patients with FH.
- Promote awareness of FH prevalence, risk factors and optimal management through education at both the patient and provider levels.
Recent Findings
As part of our mission to expand scientific understanding of FH, in collaboration with clinical site principal investi-gators (healthcare providers and academicians), the FH Foundation's Publications Committee has published the results of the CASCADE FH Registry in the form of abstracts, manuscripts and posters at medical conferences as well as peer-reviewed journals. For a list of our publications click here.
Recent Publications
Children with Heterozygous Familial Hypercholesterolemia in the United States: Data from the Cascade Screening for Awareness and Detection-FH Registry
The Journal of Pediatrics 2020 | de Ferranti, S, et al.
Patient acceptance of genetic testing for familial hypercholesterolemia in the CASCADE FH Registry
Journal of Clinical Lipidology 2020 | Gidding, SG, et al.
Perspectives from individuals with familial hypercholesterolemia on direct contact in cascade screening
Journal of Genetic Counseling 2020 | Schwiter, R, et al.
Reducing the Clinical and Public Health Burden of Familial Hypercholesterolemia - A Global Call to Action
Jama Cardiology 2020 | Representatives of the Global Familial Hypercholesterolemia Community
Clinical Sites
The CASCADE FH Registry currently has 40 sites enrolled in 23 states. If you are interested in becoming a clinical site please contact us at FHregistry@theFHfoundation.org.