Morbidity, mortality and the use of Medication in Familial Hypercholesterolemia. A registry study.

Group members: Liv Jorunn Mundal, Karianne Svendsen, Kjetil Retterstøl, Henriette Walaas Krogh

Short description:

The project is a register study that will couple data from an established health record of persons with genetically verified familiar hypercholesterolemia (FH), with a limited selection of information from several health registries. These include The Cancer Registry of Norway, The Cardiovascular Disease in Norway project (CVDNOR), The Norwegian Patient Registry, The Norwegian Cause of Death Registry, and later possible the Norwegian Prescription Database.  The FH registry consisted of 5500 people at April 30, 2014. At this time, the reservation clause expired for participation in the study. We will couple these 5500 along with 100 000 age- and sex-matched controls to the mentioned health registries.

The aim of the project is to describe treatment, morbidity and mortality of persons with FH.
The project aim to increased knowledge of the health significance of high blood cholesterol levels, and assess the health effects of long-term cholesterol-lowering treatment. This is relevant for both FH patients and the increasing proportion of the general population who have elevated blood-cholesterol levels and those that use cholesterol-lowering drugs.

The project started in 2011 and some register links have already been made. New links between the FH registry and the other health registries will be performed during spring 2019.


Sarancic M. Mortality for individuals with familial hypercholesterolemia (FH) in the period 1992-2010. Master thesis 2012.

Mundal L, Sarancic M, Ose L, Iversen PO, Borgan JK, Veierød MB, Leren TP, Retterstøl K. Mortality among patients with familial hypercholesterolemia: a registry-based study in Norway, 1992-2010. Journal of the American Heart Association. 2014;3(6):e001236.

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Mundal L. Mortality and cardiovascular morbidity in patients with familial hypercholesterolemia. Ph.d. thesis 2016.

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Mundal L, Igland J, Tell GS, Veierød M, Holven KB, Leren T, Retterstøl K. Standardized incidence ratio of peripheral arterial disease and aortic stenosis in genotyped familial hypercholesterolemia in Norway during 2001-2009. Atherosclerosis. 2017;263:e78.

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Mundal L, Igland J, Veierød MB, Holven KB, Ose L, Selmer RM, Wisløff T, Kristiansen IS, Tell GS, Leren TP, Retterstøl K. Impact of age on excess risk of coronary heart disease in patients with familial hypercholesterolaemia. Heart. Epub ahead of print: 05 April 2018. doi: 10.1136/heartjnl-2017-312706.

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