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FH Week 2020 - Latest national updates

National updates and contributions to FH Week 2020

  • Canada
  • Croatia
  • Germany
  • Greece
  • Hungary
  • Iraq
  • Iberoamerican countries
  • Japan

  • Familial hypercholesterolemia in Canada: what’s new in 2020?

    Isabelle Ruel, Liam R. Brunham, G.B. John Mancini, Robert A. Hegele, and Jacques Genest, on behalf of FH Canada investigators.

    The FH Canada registry ( now includes over 4700 patients. A new simplified and practical definition for clinical diagnosis of FH is used in Canada ( It has been incorporated into the CardioRisk app, under “FH Calculator”, which also includes an algorithm to impute a baseline or untreated LDL-C when it can’t be retrieved ( Data from all patients with FH in Canada, with a special interest for patients with homozygous FH, is now being collected to better characterize the burden of this orphan disease in our country (approx 80 HoFH patients). Two papers on the topic were recently published: Evidence for improved survival with treatment of homozygous familial hypercholesterolemia ( and The Lifelong Burden of Homozygous Familial Hypercholesterolemia ( We are also currently working on the advancement of the following research objectives:
  1. to better understand the risk of atherosclerotic cardiovascular disease in patients with FH using a clinical algorithm, or risk score, and genetic diagnosis;
  2. to identify the patient barriers to FH screening and treatment, mainly the study of the differences between men and women;
  3. to implement this new knowledge, with the help of the FH Canada network of physicians and patient organizations.

    Activities in 2020 by Croatian atherosclerosis society

    Familial hypercholesterolemia is still an under recognized disease in Croatia. Despite efforts taken in the last decade from Croatian atherosclerosis society by organizing National and International meetings and educations (such as; Croatian atherosclerosis congress every second year, Dubrovnik lipid school every second year, Meeting on atherosclerosis prevention organized by Croatian National Academy of Sciences and Arts together with Croatian atherosclerosis society every year an many smaller educational meetings) the awareness about the disease is still sparse.

    In 2020 we planned the 4th Dubrovnik lipid school (that was endorsed by EAS and IAS) but because of COVID-19 pandemic situation we had to postpone it to March 2022. We were planning to cover many topics on FH and other complex dyslipidemias during this international course.
    COVID-19 pandemic also influenced the organization of the Croatian national atherosclerosis congress that was planned for early spring 2021 so most probably due to the epidemiologic situation this meeting will also be postponed.

    Lockdown and orientation to the pandemic situation had an influence on FH screening as well. However, initiatives by Croatian atherosclerosis society managed to open new ways to cope with FH, raising awareness and screening.
    Webinairs and e-consultations were developed using IT solutions aiming to connect family physicans/GPs and hospital experts.
    Using IT solutions screening for the complex dyslipidemias were developed as a pilot programme in capital city Zagreb (for GPs). We have developed a platform for GPs to send information direct to lipid specialists and so to speed up diagnostic and therapeutic processes. All those actions as well as screening for FH among patients with early MI who were hospitalized at University Hospital Center Zagreb, Department of Cardiology resulted in finding around 50 new patients with FH.

    2020 participation in FH publications:

    Brief recommendations on the management of adult patientswith familial hypercholesterolemia during the COVID-19 pandemic
    Banach M, Penson PE, Fras Z, Vrablik M, et al.

    Inflammatory Biomarkers for Cardiovascular Risk Stratification in Familial Hypercholesterolemia.
    Bahrami A, Liberale L, Reiner Ž, Carbone F, Montecucco F, Sahebkar A.

    Treatment of children with heterozygous familial hypercholesterolemia.
    Reiner Ž, Sahebkar A.


    FH in Germany – interim results of the CaReHigh registry

    FH affects about 270.000 individuals in Germany [1,2], but only a minority are diagnosed/treated. To overcome this deficiency, CaReHigh - Cascade Screening and Registry for High Cholesterol [3] - was established in 2015 (Figure 1 [4]); inclusion criteria
    comply with the suggestions made by Klose et al. [5], [6].

    We collected baseline data (~2000 individuals up to now, mean age=54 years, 45% male, 40% with established CVD) and found that:

    • only about 10% (resp. 25%) attain LDL-C target values according to 2019 (2016) ESC/EAS dyslipidemia guidelines,
    • one third of patients received oral monotherapy (statins, ezetimibe, fibrates, bile acid sequestrants), a further one-third received oral combination therapy, about 10% were treated with a PCSK9i alone or in combination with other lipid-lowering drugs, 3% of patients received apheresis treatment with or without combination therapy, about 20% were not treated,
    • more patients achieve LDL-C target values when treated by lipid specialists compared to general practitioners,
    • in tendency more men than woman receive intensive lipid-lowering therapy.

    Upon follow-up we will examine, to which extent participation in CaReHigh supports systematic therapy of FH patients.

    [1] N. Schmidt, B. Schmidt, A. Dressel, I. Gergei, J. Klotsche, L. Pieper, H. Scharnagl, M.E. Kleber, W. Marz, H. Lehnert, D. Pittrow, G. Stalla, H.U. Wittchen, T.B. Grammer, Familial hypercholesterolemia in primary care in Germany. Diabetes and cardiovascular risk evaluation: targets and Essential Data for Commitment of Treatment (DETECT) study, Atherosclerosis 266 (2017) 24–30,

    [2] S. Walzer, K. Travers, S. Rieder, E. Erazo-Fischer, D. Matusiewicz, Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey, Clinicoecon Outcomes Res. 5 (2013 3) 189–192,

    [3] N. Schmidt, T. Grammer, I. Gouni-Berthold, U. Julius, U. Kassner, G. Klose, C. Konig, U. Laufs, B. Otte, E. Steinhagen-Thiessen, C. Wanner, W. Marz, CaRe high - cascade screening and registry for high cholesterol in Germany, Atherosclerosis Suppl. 30 (2017) 72–76,

    [4] N.Schmidt , G. Klose, U. Schatz, U. Laufs, W. Maerz, Familial Hypercholesterolemia in Germany, Aktuel Kardiol 2020; 9: 363–369 © Georg Thieme,

    [5] NHG-Standpunt Diagnostiek en behandeling van familiaire hypercholesterolemie, Huisarts Wet. 49 (2006) 288–288. doi:10.1007/BF03084705.

    [6] G. Klose, U. Laufs, W. März, E. Windler, Familial hypercholesterolemia: developments in diagnosis and treatment., Dtsch. Arztebl. Int. 111 (2014) 523–9. doi:10.3238/arztebl.2014.0523.


    In the past year, the Hellenic Familial Hypercholesterolemia (HELLAS-FH) Registry has continued to grow both in the number of registered patients, which now count more than 2000, but also in the participating sites now reaching a total of 21.
    The journey of HELLAS-FH so far has been both rewarding and challenging. HELLAS-FH growth underlines its recognition by medical community as an essential tool in the management of FH patients. Data from the registry identify shortfalls in the treatment of FH patients. Indeed, in this year’s EAS congress we report a very low LDL-C target achievement rate according to latest European guidelines, which underlines the need for more aggressive treatment. As the registry grows so does the effort needed to keep the registry up to date and analyze data. Since funding is limited, this effort is accomplished by physicians volunteering their time in the quest for knowledge. Unfortunately, the SARS-CoV-2 pandemic has taken its toll on the registry by putting an unexpected load on the healthcare system and decreasing the operating capacity of registry sites as well as discouraging patients from visiting health care providers.


    Achieving low-density lipoprotein cholesterol targets as assessed by different methods in patients with familial hypercholesterolemia: an analysis from the HELLAS-FH registry

    Update from Hungary

    We created the website four years ago ( The FH register is part of the website.
    Patients may be admitted to the FH register on the basis of Dutch criteria. Patients registered in this way are subsequently monitored by regional Lipid Centers.
    A risk assessment, final diagnosis are made, and therapy is initiated in these center.
    According to my estimates, there may be 20,000 to 40,000 heterozygous FH patients in Hungary. In comparison, 358 patients are currently enrolled in the FH registry. Unfortunately, this type of activity is very low. To improve this, in 2018, we retrospectively examined patients previously hospitalized for cardiovascular disease in two large hospitals in the Northern Great Plain region using the data mining method. Data from 1,342,124 patients were processed. According to the Dutch criterion, 6 patients scored above 8, 225 patients scored 6-8, and 11706 patients scored 3-5. These data suggest that 1 in every 340 people is familial hypercholesterolemic.

    According to the current hungarian recommendation, the LDL target for patients with FH is 1.8 mmol/L. Based on the 2019 EAS/ESC recommendation, the VIII. Hungarian Cardiovascular Consensus Conference modifies the LDL target values in the very high and high risk category according to the European recommendation.
    First therapy of choice is maximally tolerated statin. If the target is not reached with maximally tolerable statin therapy, the statin + ezetimibe combination is recommended and the addition of a PCSK9 inhibitor is recommended in all patients who have a definitive cardiovascular event and do not reach the target with the statin + ezetimibe combination.
    In the aforementioned group of patients, we can provide PCSK9 inhibitor treatment to our patients upon individual request.

    HoFH paper in Iberoamerican countries just published

    Phenotypical, Clinical, and Molecular Aspects of Adults and Children With Homozygous Familial Hypercholesterolemia in Iberoamerica
    Ana Catarina Alves, Rodrigo Alonso, José Luís Diaz-Diaz, Ana Margarida Medeiros et al.


Achievements in Iraq since the start of the FH network (three years ago)
  • Establishment of 13 lipid clinics all over the country for the purpose of early detection and proper treatment of Iraqi FH patients
  • The Launch of the national pediatric FH screening program in three Iraqi cities
  • The launch and implementation of the premarital FH screening program in Iraq for the first time in the world.

    Update from Iraq;



    Brief News on the Status of FH in Japan

    1. Japan Atherosclerosis Society (JAS) has distributed an FH Webinar which is targeted especially to healthcare providers and offered them credits of the “Certified Hypertension & Cardiovascular Disease Prevention Educator”. The average numbers of the viewers of this FH webinar during January to March 2020 were 81 persons.
    2. JAS has presented a seminar entitled “Nutritional Management for FH Patients” at the 20th JAS Forum on February 2, 2020 in Tokyo.
    3. A webinar entitled “Sonographic Measurement of Achilles Tendon Thickness of FH” was distributed during the 52nd JAS Annual meeting on July 17-31, 2020. Total viewers of this session were 1012 persons.
    4. The JAS Joint Symposium regarding “FH Screening” will be held at the 60th Annual Meeting of the Japan Society of Clinical Chemistry on October 30-November 1, 2020 in Tokyo.
    5. JAS has presented a Joint e-Learning with AMEE (Association of Medical Education and Ethics) entitled “New Perspectives for Familial Hypercholesterolemia: Do Not Miss FH Patients”.


    Comparative aspects of the care of familial hypercholesterolaemia in the “Ten Countries Study”
    Jing Pang, Dick C Chan, Miao Hu, Lauretta A Muir, et al.

    Probucol Trial for Secondary Prevention of Atherosclerotic Events in Patients with Coronary Heart Disease (PROSPECTIVE)
    Shizuya Yamashita, Hidenori Ara, Hideaki Bujo, Daisaku Masuda

    Statin intolerance clinical guide 2018
    Kouji Kajinami, Kazuhisa Tsukamoto, Shinji Koba, Ikuo Inoue, et al.

    Familial hypercholesterolaemia: evolving knowledge for designing adaptive models of care
    Gerald F Watts, Samuel S Gidding, Pedro Mata, Jing Pang, et al.

    Find more local initiatives by the patient representative groups of FH Europe here >>
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