When you choose to participate in the FH disease registry you are contributing to the knowledge of FH. This is the first disease registry of its kind. This registry is a joint project of the National Institutes of Health, Patient Crossroads, The FH Foundation, corporate sponsors, and dedicated clinicians and researchers all working together to increase the rate of diagnosis of FH and proactive treatment of FH.
You as a patient will always be able to access the information you enter. You will also have the opportunity to add to it over time. In addition, you will be given information in return about how your experience of FH compares with others. You and your family will be empowered with more knowledge. Hopefully, over time, all of us with FH will also be offered more effective treatment options, that raise our quality of our lives.
All the information is de-identified. Medical professionals and geneticists will be curating the data entered to make sure it is correct and put in a standardized form. This makes it possible for qualified researchers to utilize this data in their search ways to improve the diagnosis and treatment of FH. The highest level of integrity and technology is used to guard patient privacy and rights.
The FH Foundation is your only contact. If you wish to be made aware of opportunities to possibly participate in a clinical study, the FH Foundation will send you e-mail updates. No other group will have your personal information or will be able to contact you.
This registry is a historic step forward for those of us with FH. Please consider participating and making a difference!