Inherited Cholesterol Disorders--Familial Hypercholesterolemia

Consent to Participant
A MEDPED physician makes a diagnosis of familial hypercholesterolemia (FH) in an individual by reviewing laboratory tests for cholesterol, especially the "bad" cholesterol or LDL cholesterol (both for an individual and their close family members) and checking family history of coronary artery disease, including heart attacks, bypass surgery and angioplasty.  After MEDPED makes a diagnosis of FH for someone with inherited high cholesterol, we can typically find (with permission) an average of 4-5 additional family members who also have this condition.  By identifying persons with this severe lipid disorder, we hope to encourage better treatment of cholesterol levels in order to prevent heart attacks at an early age.  This registry may also help with research efforts about inherited high cholesterol.
To register with MEDPED, we will be asking questions about your medical history, prior cholesterol levels, and treatments you have had for your high cholesterol.  Registration should only take about 15 minutes.
Confidentiality and Authorization
All information collected about you during the course of our communication will be kept strictly confidential and will be locked in files and in password-protected commputers.  Information will only be used for research studies at Cardiovascular Genetics Research, University of Utah.  The University's Institutional Review Board, the committee that ensures ethical human research, may also have access to your information for this research project.
Contact the Institutinal Review Board (IRB) if you have questions regarding your rights as a research participant.  Also, contact the IRB if you have questions, complaints or conserns which you do not feel you can discuss with the investigator.  The University of Utah IRB may be reached by phone at (801)-581-3655 or by e-mail at irb@hsc.utah.edu.  If you have questions, complaints, or feel you have been harmed in any way, please contact Dr. Paul Hopkins at 801-581-3888 extension 228.
This authorization does not have an expiration date.  Results of statistics about the lipid disorder registry may be published or present at meetings; however, your name and other identifying information will be kept private. (We will not share your information with anyone outside the University of Utah Health Science Center, unless required by law or we receive your permission.)
Your participation is voluntary.  You can request, for any reason, to be removed from the registry at any time, without penalty, by writing or by calling MEDPED.
Completing the registration process will serve as your consent to participate
.
To register, please click here.


University of Utah Salt Lake City, UT 84112 801- 581-8720
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