The German CaRe high registry for familial hypercholesterolemia – Sex differences, treatment strategies, and target value attainment

Winfried März, Nina Schmidt, Ira an Haack, Alexander Dressel, Tanja B. Grammer, Marcus E. Kleber, Andrea Baessler, F. Ulrich Beil, Ioanna Gouni-Berthold, Ulrich Julius, Ursula Kassner, Julius L. Katzmann, Gerald Klose, Christel König, Wolfgang Koenig, Ann Cathrin Koschker, Ulrich Laufs, Martin Merkel, Britta Otte, Klaus G. ParhoferWibke Hengstenberg, Heribert Schunkert, Ksenija Stach-Jablonski, Elisabeth Steinhagen-Thiessen, Christoph B. Olivier, Harry Hahmann, Stefan Krzossok, Anja Vogt, Dirk Müller-Wieland, Ulrike Schatz

Research output: Contribution to journalReview articlepeer-review


Background and aims: Familial hypercholesterolemia (FH) is among the most common genetic disorders in primary care. However, only 15% or less of patients are diagnosed, and few achieve the goals for low-density lipoprotein cholesterol (LDL-C). In this analysis of the German Cascade Screening and Registry for High Cholesterol (CaRe High), we examined the status of lipid management, treatment strategies, and LDL-C goal attainment according to the ESC/EAS dyslipidemia guidelines. Methods: We evaluated consolidated datasets from 1501 FH patients diagnosed clinically and seen either by lipid specialists or general practitioners and internists. We conducted a questionnaire survey of both the recruiting physicians and patients. Results: Among the 1501 patients, 86% regularly received lipid-lowering drugs. LDL-C goals were achieved by 26% and 10% of patients with atherosclerotic cardiovascular disease (ASCVD) according to the 2016 and 2019 ESC/EAS dyslipidemia guidelines, respectively. High intensity lipid-lowering was administered more often in men than in women, in patients with ASCVD, at higher LDL-C and in patients with a genetic diagnosis of FH. Conclusions: FH is under-treated in Germany compared to guideline recommendations. Male gender, genetic proof of FH, treatment by a specialist, and presence of ASCVD appear to be associated with increased treatment intensity. Achieving the LDL-C goals of the 2019 ESC/EAS dyslipidemia guidelines remains challenging if pre-treatment LDL-C is very high.

Original languageEnglish
Pages (from-to)6-15
Number of pages10
JournalAtherosclerosis Plus
StatePublished - Sep 2023
Externally publishedYes


  • Adherence
  • Cardiovascular risk
  • Cascade screening
  • Familial hypercholesterolemia
  • Low-density lipoproteins
  • Patient registry
  • Treatment


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