InterChol Survey

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First Name:
Middle Name:
Last Name:
Your institute:

1. Have you identified patients with gain-of-function mutations in PCSK9?
2. How many?
3. To how many separate families do they belong?
4. Have you identified affected family members of index cases with gain-of-function mutations in PCSK9?
5. How many?
6. Which gain-of-function mutations in PCSK9 have you characterized?
7. Is clinical data on your patients available (physical examination, lipoprotein profile, biochemical parameters, cardiovascular disease, response to lipid lowering therapy)?
8. Do you have direct access to this patient population?
9. Are there legal limitations in providing this data for the purpose of a natural history study?
10. Is review by a Medical Ethical Review Board required?
11. Would you be willing to participate in the proposed study if reasonable financial compensation (on a per-patient basis) is provided for the time and effort required to enter the data into an online database?
12. How many patients with heterozygous Familial Hypercholesterolemia do you treat?
13. How many patients with homozygous Familial Hypercholesterolemia do you treat?

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InterChol Survey