FH_CVC 2015 Sanne Krebbekx- volledig
1
Sanne Krebbekx ₁, Kang Jing Zheng ₂, Sarah Rameckers ₁, G Kees Hovingh ₁, Janneke Wiekoek ₃, Erik Stroes ₁ Background Conclusions & Clinical Perspecve The cessation of the central screening program for FH has resulted in a massive decrease in the number of new FH-index cases, with an even higher decrease in the number of relatives detected with FH. These data emphasize the need for the new foundation LEEFH to further develop successful local strategies to promote family cascade screening programs in the Netherlands. Methods Results Sanne Krebbekx, RN Clinical Epidemiologist in training [email protected] Collapsed Detecon of Familial Hypercholesterolemia cases in The Netherlands ₁Department of Vascular Medicine, AMC, Amsterdam, The Netherlands ₂University of Amsterdam, Amsterdam, The Netherlands ₃Schng LEEFH, Amsterdam, The Netherlands Using the centralized database for FH, we analyzed retrospecvely the yearly number of new index paents diagnosed with FH as well as the associated number of relaves screened from 2002 unl 2014 in the Netherlands. * Diagnoses for index versus non-index paents * Posive and negave DNA tests * Comparison between diagnoses during STOEH and diagnoses during LEEFH Familial hypercholesterolemia (FH) is one of the most frequent, autosomal dominant diseases in the Netherlands. Aſter 20 years during which a naonwide screening program for FH was executed, the Ministry of Health decided to disconnue this successful program as of January 2014. Subsequently, cascade screening for FH was referred to the hospitals, coordinated by schng LEEFH. In the present study we evaluated the consequences of this new, decentralized screening method to detect FH. * From 2001 onwards, we observed a plateauing increase in index FH cases from 131 in 2001 to 1342 in 2013, leading to a cumulave number of FH paents detected of 27.000. * Following the disconnuaon of the central screening program January 2014, the incidence of DNA-confirmed FH index paents declined by 80 % (266 in 2014). * In parallel, the number of siblings referred for FH-DNA diagnosis following a posive family index diagnosis declined by more than 95% (from 1000-1500 to < 50 relaves). 0 500 1000 1500 2000 2500 3000 3500 4000 4500 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 FH diagnoses in The Netherlands 2002-2014 Posive versus negave Posive N e g ave Figure 1: All posive FH diagnoses for both index and non-index paents from 2002 unl 2014 in The Netherlands. This figure shows a plateauing increase in index FH cases from 2001 to 2013. In 2014 we can see a decrease of 80% in the incidence of DNA-confirmed FH index paents. The number of siblings referred for FH-DNA diagnosis following a posive family index diagnosis decreased by more than 95% in 2014. Figure 2: Posive and negave FH diagnoses in The Netherlands from 2002 unl 2014. This figure shows a decrease in posive FH diagnoses as well as a declining number of FH DNA tests in 2014. Figure legends Figures Figure 1 Figure 2
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Transcript of FH_CVC 2015 Sanne Krebbekx- volledig
Sanne Krebbekx ₁, Kang Jing Zheng ₂, Sarah Rameckers ₁, G Kees Hovingh ₁, Janneke Wittekoek ₃, Erik Stroes ₁
Background
Conclusions & Clinical Perspective
The cessation of the central screening program for FH has resulted in a massive decrease in the number of new FH-index cases, with an even higher decrease in the number of relatives detected with FH.
These data emphasize the need for the new foundation LEEFH to further develop successful local strategies to promote family cascade screening programs in the Netherlands.
Methods
Results
Sanne Krebbekx, RNClinical Epidemiologist in [email protected]
Collapsed Detection of Familial Hypercholesterolemia cases in The Netherlands
₁Department of Vascular Medicine, AMC, Amsterdam, The Netherlands₂University of Amsterdam, Amsterdam, The Netherlands
₃Stichting LEEFH, Amsterdam, The Netherlands
Using the centralized database for FH, we analyzed retrospectively the yearly number of new index patients diagnosed with FH as well as the associated number of relatives screened from 2002 until 2014 in the Netherlands.
* Diagnoses for index versus non-index patients
* Positive and negative DNA tests
* Comparison between diagnoses during STOEH and diagnoses during LEEFH
Familial hypercholesterolemia (FH) is one of the most frequent, autosomal dominant diseases in the Netherlands.
After 20 years during which a nationwide screening program for FH was executed, the Ministry of Health decided to discontinue this successful program as of January 2014.
Subsequently, cascade screening for FH was referred to the hospitals, coordinated by stichting LEEFH.
In the present study we evaluated the consequences of this new, decentralized screening method to detect FH.
* From 2001 onwards, we observed a plateauing increase in index FH cases from 131 in 2001 to 1342 in 2013, leading to a cumulative number of FH patients detected of 27.000.
* Following the discontinuation of the central screening program January 2014, the incidence of DNA-confirmed FH index patients declined by 80 % (266 in 2014).
* In parallel, the number of siblings referred for FH-DNA diagnosis following a positive family index diagnosis declined by more than 95% (from 1000-1500 to < 50 relatives).
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2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014
FH diagnoses in The Netherlands 2002-2014Positive versus negative
PositiveNegative
Figure 1: All positive FH diagnoses for both index and non-index patients from 2002 until 2014 in The Netherlands. This figure shows a plateauing increase in index FH cases from 2001 to 2013. In 2014 we can see a decrease of 80% in the incidence of DNA-confirmed FH index patients. The number of siblings referred for FH-DNA diagnosis following a positive family index diagnosis decreased by more than 95% in 2014.
Figure 2: Positive and negative FH diagnoses in The Netherlands from 2002 until 2014. This figure shows a decrease in positive FH diagnoses as well as a declining number of FH DNA tests in 2014.
Figure legends
FiguresFigure 1 Figure 2
