Tracking awareness and management of familial hypercholesterolemia
CASCADE FH Registry (CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia Registry)
The Familial Hypercholesterolemia Foundation · NCT01960244
This study is trying to see how well people with familial hypercholesterolemia are being treated and managed by tracking their health and experiences over time.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | The Familial Hypercholesterolemia Foundation (other) |
| Locations | 1 site (Palo Alto, California) |
| Trial ID | NCT01960244 on ClinicalTrials.gov |
What this trial studies
The CASCADE-FH Registry is a national initiative designed to monitor therapy, clinical outcomes, and patient-reported outcomes for individuals with familial hypercholesterolemia (FH). This observational study involves collaboration among lipid specialists, cardiologists, primary care providers, and patients to enhance awareness and improve management of FH. Patients can enroll through clinics, an online portal, or via electronic health records, allowing for comprehensive data collection on their health status and treatment experiences. The registry aims to gather valuable insights that can lead to better outcomes for FH patients over time.
Who should consider this trial
Good fit: Ideal candidates include individuals with a clinical diagnosis of familial hypercholesterolemia or a genetic mutation associated with the condition.
Not a fit: Patients with hyperlipidemia due to other medical conditions, such as untreated hypothyroidism or nephrotic syndrome, may not benefit from this study.
Why it matters
Potential benefit: If successful, this initiative could significantly improve the management and outcomes of patients with familial hypercholesterolemia.
How similar studies have performed: Other studies focusing on familial hypercholesterolemia have shown promise in improving awareness and management, suggesting that this approach could be effective.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Online Patient Enrollment Inclusion Criteria: * Patients with existing clinical diagnosis of FH; * Patients with genetic mutation of FH; * Patients with an initial (pretreatment) LDL level \>190 mg/dL or total cholesterol \>300 mg/dL; * Patients currently taking a lipid-lowering medication and have an LDL \>124 mg/dL or total cholesterol \>195 mg/dL. Clinic Patient Enrollment Inclusion Criteria: * Patients with existing clinical diagnosis of FH using one of the three clinical diagnostic (US MedPed Program Criteria, Simon Broome Register Criteria with diagnosis of "Probable", Dutch Lipid Clinic Network Diagnostic Criteria with diagnosis of "Probable")tools for FH; or * Patients with genetic mutation of FH Exclusion Criteria: * Patients will be excluded from participation in the registry when a known medical condition other than FH that is thought to contribute to hyperlipidemia (i.e., untreated hypothyroidism, nephrotic syndrome, cholestasis hypopituitarism).
Where this trial is running
Palo Alto, California
- Stanford Center for Inherited Cardiovascular Diseases — Palo Alto, California, United States (RECRUITING)
Study contacts
- Study coordinator: MARY CARD, MBA
- Email: mcc@thefhfoundation.org
- Phone: 6265834674
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Hypercholesterolemia, familial, hypercholesterolemia, FH