Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey
S Walzer,1 K Travers,2 S Rieder,3 E Erazo-Fischer,3 D Matusiewicz41MArS Market Access and Pricing Strategy UG (hb), Weil am Rhein, Germany; 2United Biosource Corporation, Lexington, USA; 3Alcimed GmbH, Cologne, Germany; 4Institute for Health Care Management and Research, Faculty of Economics and Bus...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Dove Medical Press
2013-05-01
|
| Series: | ClinicoEconomics and Outcomes Research |
| Online Access: | http://www.dovepress.com/homozygous-familial-hypercholesterolemia-hofh-in-germany-an-epidemiolo-a12937 |
| _version_ | 1811309677592444928 |
|---|---|
| author | Walzer S Travers K Rieder S Erazo-Fischer E Matusiewicz D |
| author_facet | Walzer S Travers K Rieder S Erazo-Fischer E Matusiewicz D |
| author_sort | Walzer S |
| collection | DOAJ |
| description | S Walzer,1 K Travers,2 S Rieder,3 E Erazo-Fischer,3 D Matusiewicz41MArS Market Access and Pricing Strategy UG (hb), Weil am Rhein, Germany; 2United Biosource Corporation, Lexington, USA; 3Alcimed GmbH, Cologne, Germany; 4Institute for Health Care Management and Research, Faculty of Economics and Business Administration, University of Duisburg-Essen, Essen, GermanyIntroduction: In Europe a disease is recognized as rare if less than 1 in 2000 people suffer from the specific disease. In patients with familial homozygous hypercholesterolemia (HoFH) the accumulation of low-density lipoprotein cholesterol (LDL-C) leads to generalized atherosclerosis due to an insufficient functioning of the LDL-C receptors. Patients die early sometimes even in the mid-30s, from myocardial infarction or stroke. For the German population, insufficient epidemiological evidence exists.Methods: A systematic literature search in EMBASE and Medline was performed in conjunction with a targeted manual search for epidemiological HoFH studies. Additionally a nationwide survey was conducted in Germany in all identified apheresis- and lipid centers. The purpose of the survey was the validation of the systematic literature search results based on empirical (practice) data.Results: In total 961 publications were found, 874 were excluded based on pre-defined exclusion criteria leaving only 87 for further review. After review of the identified abstracts (n = 87) 23 publications were identified as epidemiological studies. Only one publication was found which reported a prevalence of 1:1,000,000. The qualitative survey among 187 physicians in Germany also revealed a low prevalence: 95 HoFH patients were identified in 35 centers.Conclusion: The estimated frequency of homozygous familial hypercholesterolemia patients in Germany is around 95 (1:860,000) and the disease should be recognized as rare according to the definition of the European Medical Agency.Keywords: epidemiology, homozygous familial hypercholesterolemia (HoFH), Germany, survey |
| first_indexed | 2024-04-13T09:45:49Z |
| format | Article |
| id | doaj.art-97089cb2598043a3b4d2a3a4c69842f0 |
| institution | Directory Open Access Journal |
| issn | 1178-6981 |
| language | English |
| last_indexed | 2024-04-13T09:45:49Z |
| publishDate | 2013-05-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | ClinicoEconomics and Outcomes Research |
| spelling | doaj.art-97089cb2598043a3b4d2a3a4c69842f02022-12-22T02:51:45ZengDove Medical PressClinicoEconomics and Outcomes Research1178-69812013-05-012013default189192Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological surveyWalzer STravers KRieder SErazo-Fischer EMatusiewicz DS Walzer,1 K Travers,2 S Rieder,3 E Erazo-Fischer,3 D Matusiewicz41MArS Market Access and Pricing Strategy UG (hb), Weil am Rhein, Germany; 2United Biosource Corporation, Lexington, USA; 3Alcimed GmbH, Cologne, Germany; 4Institute for Health Care Management and Research, Faculty of Economics and Business Administration, University of Duisburg-Essen, Essen, GermanyIntroduction: In Europe a disease is recognized as rare if less than 1 in 2000 people suffer from the specific disease. In patients with familial homozygous hypercholesterolemia (HoFH) the accumulation of low-density lipoprotein cholesterol (LDL-C) leads to generalized atherosclerosis due to an insufficient functioning of the LDL-C receptors. Patients die early sometimes even in the mid-30s, from myocardial infarction or stroke. For the German population, insufficient epidemiological evidence exists.Methods: A systematic literature search in EMBASE and Medline was performed in conjunction with a targeted manual search for epidemiological HoFH studies. Additionally a nationwide survey was conducted in Germany in all identified apheresis- and lipid centers. The purpose of the survey was the validation of the systematic literature search results based on empirical (practice) data.Results: In total 961 publications were found, 874 were excluded based on pre-defined exclusion criteria leaving only 87 for further review. After review of the identified abstracts (n = 87) 23 publications were identified as epidemiological studies. Only one publication was found which reported a prevalence of 1:1,000,000. The qualitative survey among 187 physicians in Germany also revealed a low prevalence: 95 HoFH patients were identified in 35 centers.Conclusion: The estimated frequency of homozygous familial hypercholesterolemia patients in Germany is around 95 (1:860,000) and the disease should be recognized as rare according to the definition of the European Medical Agency.Keywords: epidemiology, homozygous familial hypercholesterolemia (HoFH), Germany, surveyhttp://www.dovepress.com/homozygous-familial-hypercholesterolemia-hofh-in-germany-an-epidemiolo-a12937 |
| spellingShingle | Walzer S Travers K Rieder S Erazo-Fischer E Matusiewicz D Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey ClinicoEconomics and Outcomes Research |
| title | Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey |
| title_full | Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey |
| title_fullStr | Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey |
| title_full_unstemmed | Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey |
| title_short | Homozygous familial hypercholesterolemia (HoFH) in Germany: an epidemiological survey |
| title_sort | homozygous familial hypercholesterolemia hofh in germany an epidemiological survey |
| url | http://www.dovepress.com/homozygous-familial-hypercholesterolemia-hofh-in-germany-an-epidemiolo-a12937 |
| work_keys_str_mv | AT walzers homozygousfamilialhypercholesterolemiahofhingermanyanepidemiologicalsurvey AT traversk homozygousfamilialhypercholesterolemiahofhingermanyanepidemiologicalsurvey AT rieders homozygousfamilialhypercholesterolemiahofhingermanyanepidemiologicalsurvey AT erazofischere homozygousfamilialhypercholesterolemiahofhingermanyanepidemiologicalsurvey AT matusiewiczd homozygousfamilialhypercholesterolemiahofhingermanyanepidemiologicalsurvey |