cfhr

CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia

 

What Is a Registry?

Patient Registries collect information about patients’ experience with a certain disease. This enables patients to become more involved in their own disease management. Registries are a way to collect information on disease patterns, gaps in diagnosis, and quality of life, which can advance research. This increases knowledge of the disease and ultimately leads to further improvement in patient care.

Why “CASCADE FH”?

CASCADE FH stands for CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia. Cascade screening is a method of identifying individuals at risk of an inherited condition (in this case FH). It simply means that once one individual is diagnosed with FH, all their immediate relatives (parents, siblings, children) can be screened for this inherited condition. This is very important because FH is a family disorder – each first-degree relative of someone with FH has a 50% chance of also having it.

FH is so underdiagnosed in the United States that the majority of people with this disorder don’t know they have it. What does this mean? It means that these people are exposed to a 20x higher risk of early heart attacks and are not receiving treatment that can save their life.

The goals of this registry are:
  • to learn more about FH
  • identify those families that are affected by FH but don’t know it yet
  • encourage early and adequate treatment to prevent early heart disease and heart attacks.

Why Should I Join?

By putting the patient first, we are empowering people who have FH to become actively involved and learn more about their own disease. We also hope to motivate family members to be screened for FH. All those living with this life-threatening yet treatable condition are in urgent need of receiving proper care for a healthier, longer life.

The CDC has designated familial hypercholesterolemia as a Tier-1 disease, calling it a “winnable battle”. This means that this is a disease of top priority to public health, which is treatable yet not receiving the attention it needs. Join the CASCADE FH Registry and help us find all those families in the U.S. that are impacted by inherited high cholesterol.

In Summary

  • Familial Hypercholesterolemia runs in families. If you have FH, someone else in your family also has it.
  • 90% of people with FH in the United States are not diagnosed and not treated.
  • 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

All the information you enter in the CASCADE FH Registry is confidential and stored on a secure (HIPAA-compliant) server. We have partnered with the Duke Clinical Research Institute (DCRI) to build and operationalize this important registry. 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. All information you enter is saved automatically and you can come back any time to complete your questionnaire.

 

Patient Portal

Health Professionals