CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia
What Is a Registry?
A patient registry is a database were individuals can enter information about a certain disease. Registries enable patients to become more involved in their own disease management and are a way to collect research data on patients’ experiences disease patterns and trends, gaps in diagnosis. This will increase the knowledge of a certain disease and ultimately leads to further improvement in patient health outcomes.
Why Should I Join?
A new era is on the horizon for those with FH. By putting the patient first, we are empowering patients to help the FH community. We want patients to become actively involved and learn more about their own disease. We want them to motivate their family members to be screened for FH. Without accurate diagnosis, optimal care is not possible. Only YOU can help the medical community know the reality of FH and how it impacts your family.
If we all share our stories, we can better identify gaps in care and address them, so that all those with FH can live longer, healthier lives.
Why “CASCADE FH”?
CASCADE FH stands for CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia. Cascade testing or screening is a method of identifying individuals at risk of a inherited condition (in this case FH). Once one individual in a family is diagnosed with FH, their immediate relatives (parents, siblings, children) should be screened for FH; they have a 50% risk or chance of inheriting it.
- Familial Hypercholesterolemia runs in families. If you have FH, at least someone else in your family also has FH.
- At least 90% of people with FH are not diagnosed.
- FH is a life-threatening disease: it causes heart attacks at an early age.
- Good news: once identified FH is treatable!
Sign up: Patient Portal
Our CASCADE FH Registry is confidential and secure (HIPAA-compliant). We have partnered with the Duke Clinical Research Institute (DCRI) to build and operationalize it. The DCRI is one of the most trusted organizations for this work and has handled many large scale patient registries. Your information will not be shared with anyone outside of The FH Foundation or DCRI.
We are working to improve your CASCADE FH Registry experience. Starting August 1 2015, access to the Registry will not be available while we make an upgrade. You will be able to access your account on our new platform October 2015 . We thank you for your patience and your participation!