About the CASCADE FH RegistryTM
Familial Hypercholesterolemla (FH) is one of the most common life-threatening family disorders. If you have FH, at least someone else in your family also has FH. Individuals with FH remain vastly under-diagnosed and under-treated and are at an increased risk for heart disease and heart attacks at a very young age. However, FH is manageable with the right care.
Promote understanding of FH in the medical community and public domain.
Examine gaps in care for those living with FH.
Improve adherence to guideline-recommended treatments for FH
- Improve the quality of care for individuals living with FH
- Advance the scientific understanding of FH
- Increase the rate of FH diagnosis
A registry is a database where individuals can enter information about a certain disease. Registries enable individuals to become more involved in their own disease management. They are also a way to collect research data on diagnosis, individuals’ experiences, disease patterns and trends, as well as gaps in care. Registries help researchers increase the knowledge of a certain disease, ultimately leading to further improvement in health outcomes.
The CASCADE FH Registry™ is confidential and secure (HIPAA-compliant & HITRUST certified). We have partnered with Zilker Technology & Catalyze.io to build and operationalize it. Catalyze.io is one of the most trusted platforms for this work and has handled many large-scale healthcare sites.
Your information will be shared with our research partners in a de-identified manner.Your name and contact information will never be provided to any other person, group or organization without your expressed prior permission.