Overview of the current status of familial
hypercholesterolaemia care in over 60 countries - The EAS
Familial Hypercholesterolaemia Studies Collaboration (FHSC)

VALLEJO-VAZ, A.J., M. DE MARCO, C.A.T. STEVENS, A. AKRAM, Tomáš FREIBERGER, G.K. HOVINGH, J.J.P. KASTELEIN, P. MATA, F.J. RAAL, R.D. SANTOS, H. SORAN, G.F. WATTS, M. ABIFADEL, C.A. AGUILAR-SALINAS, M. AL-KHNIFSAWI, F.A. ALKINDI, F. ALNOURI, R. ALONSO, K. AL-RASADI, A. AL-SARRAF, T.F. ASHAVAID, C.J. BINDER, M.P. BOGSRUD, M. BOURBON, E. BRUCKERT, K. CHLEBUS, P. CORRAL, O. DESCAMPS, R. DURST, M. EZHOV, Z. FRAS, J. GENEST, U. GROSELJ, M. HARADA-SHIBA, M. KAYIKCIOGLU, K. LALIC, C.S.P. LAM, G. LATKOVSKIS, U. LAUFS, E. LIBEROPOULOS, J. LIN, V. MAHER, N. MAJANO, A.D. MARAIS, W. MARZ, E. MIRRAKHIMOV, A.R. MISEREZ, O. MITCHENKO, H.M. NAWAWI, B.G. NORDESTGAARD, G. PARAGH, Z. PETRULIONIENE, B. POJSKIC, A. POSTADZHIYAN, A. REDA, Z. REINER, W.E. SADOH, A. SAHEBKAR, A. SHEHAB, A.B. SHEK, M. STOLL, T.C. SU, T. SUBRAMANIAM, A.V. SUSEKOV, P. SYMEONIDES, M. TILNEY, B. TOMLINSON, T.H. TRUONG, A.D. TSELEPIS, A. TYBJAERG-HANSENB, A. VAZQUEZ-CARDENAS, M. VIIGIMAA, B. VOHNOUT, E. WIDEN, S. YAMASHITA, M. BANACH, D. GAITA, L.X. JIANG, L. NILSSON, L.E. SANTOS, H. SCHUNKERT, L. TOKGOZOGLU, J. CAR, A.L. CATAPANO and K.K. RAY. Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC). Atherosclerosis. Clare: ELSEVIER SCI IRELAND LTD, 2018, vol. 277, OCT, p. 234-255. ISSN 0021-9150. Available from: https://dx.doi.org/10.1016/j.atherosclerosis.2018.08.051.

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@article{1498538,
   author = {VallejoandVaz, A.J. and De Marco, M. and Stevens, C.A.T. and Akram, A. and Freiberger, Tomáš and Hovingh, G.K. and Kastelein, J.J.P. and Mata, P. and Raal, F.J. and Santos, R.D. and Soran, H. and Watts, G.F. and Abifadel, M. and AguilarandSalinas, C.A. and AlandKhnifsawi, M. and AlKindi, F.A. and Alnouri, F. and Alonso, R. and AlandRasadi, K. and AlandSarraf, A. and Ashavaid, T.F. and Binder, C.J. and Bogsrud, M.P. and Bourbon, M. and Bruckert, E. and Chlebus, K. and Corral, P. and Descamps, O. and Durst, R. and Ezhov, M. and Fras, Z. and Genest, J. and Groselj, U. and HaradaandShiba, M. and Kayikcioglu, M. and Lalic, K. and Lam, C.S.P. and Latkovskis, G. and Laufs, U. and Liberopoulos, E. and Lin, J. and Maher, V. and Majano, N. and Marais, A.D. and Marz, W. and Mirrakhimov, E. and Miserez, A.R. and Mitchenko, O. and Nawawi, H.M. and Nordestgaard, B.G. and Paragh, G. and Petrulioniene, Z. and Pojskic, B. and Postadzhiyan, A. and Reda, A. and Reiner, Z. and Sadoh, W.E. and Sahebkar, A. and Shehab, A. and Shek, A.B. and Stoll, M. and Su, T.C. and Subramaniam, T. and Susekov, A.V. and Symeonides, P. and Tilney, M. and Tomlinson, B. and Truong, T.H. and Tselepis, A.D. and TybjaergandHansenb, A. and VazquezandCardenas, A. and Viigimaa, M. and Vohnout, B. and Widen, E. and Yamashita, S. and Banach, M. and Gaita, D. and Jiang, L.X. and Nilsson, L. and Santos, L.E. and Schunkert, H. and Tokgozoglu, L. and Car, J. and Catapano, A.L. and Ray, K.K.},
   article_location = {Clare},
   article_number = {OCT},
   doi = {http://dx.doi.org/10.1016/j.atherosclerosis.2018.08.051},
   keywords = {Familial hypercholesterolaemia; Primary dyslipidaemia; FHSC},
   language = {eng},
   issn = {0021-9150},
   journal = {Atherosclerosis},
   title = {Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)},
   url = {https://www.sciencedirect.com/science/article/pii/S0021915018313595?via%3Dihub},
   volume = {277},
   year = {2018}
}

TY  - JOUR
ID  - 1498538
AU  - Vallejo-Vaz, A.J. - De Marco, M. - Stevens, C.A.T. - Akram, A. - Freiberger, Tomáš - Hovingh, G.K. - Kastelein, J.J.P. - Mata, P. - Raal, F.J. - Santos, R.D. - Soran, H. - Watts, G.F. - Abifadel, M. - Aguilar-Salinas, C.A. - Al-Khnifsawi, M. - AlKindi, F.A. - Alnouri, F. - Alonso, R. - Al-Rasadi, K. - Al-Sarraf, A. - Ashavaid, T.F. - Binder, C.J. - Bogsrud, M.P. - Bourbon, M. - Bruckert, E. - Chlebus, K. - Corral, P. - Descamps, O. - Durst, R. - Ezhov, M. - Fras, Z. - Genest, J. - Groselj, U. - Harada-Shiba, M. - Kayikcioglu, M. - Lalic, K. - Lam, C.S.P. - Latkovskis, G. - Laufs, U. - Liberopoulos, E. - Lin, J. - Maher, V. - Majano, N. - Marais, A.D. - Marz, W. - Mirrakhimov, E. - Miserez, A.R. - Mitchenko, O. - Nawawi, H.M. - Nordestgaard, B.G. - Paragh, G. - Petrulioniene, Z. - Pojskic, B. - Postadzhiyan, A. - Reda, A. - Reiner, Z. - Sadoh, W.E. - Sahebkar, A. - Shehab, A. - Shek, A.B. - Stoll, M. - Su, T.C. - Subramaniam, T. - Susekov, A.V. - Symeonides, P. - Tilney, M. - Tomlinson, B. - Truong, T.H. - Tselepis, A.D. - Tybjaerg-Hansenb, A. - Vazquez-Cardenas, A. - Viigimaa, M. - Vohnout, B. - Widen, E. - Yamashita, S. - Banach, M. - Gaita, D. - Jiang, L.X. - Nilsson, L. - Santos, L.E. - Schunkert, H. - Tokgozoglu, L. - Car, J. - Catapano, A.L. - Ray, K.K.
PY  - 2018
TI  - Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)
JF  - Atherosclerosis
VL  - 277
IS  - OCT
SP  - 234-255
EP  - 234-255
PB  - ELSEVIER SCI IRELAND LTD
SN  - 00219150
KW  - Familial hypercholesterolaemia
KW  - Primary dyslipidaemia
KW  - FHSC
UR  - https://www.sciencedirect.com/science/article/pii/S0021915018313595?via%3Dihub
N2  - Background and aims: Management of familial hypercholesterolaemia (FH) may vary across different settings due to factors related to population characteristics, practice, resources and/or policies. We conducted a survey among the worldwide network of EAS FHSC Lead Investigators to provide an overview of FH status in different countries. Methods: Lead Investigators from countries formally involved in the EAS FHSC by mid-May 2018 were invited to provide a brief report on FH status in their countries, including available information, programmes, initiatives, and management. Results: 63 countries provided reports. Data on FH prevalence are lacking in most countries. Where available, data tend to align with recent estimates, suggesting a higher frequency than that traditionally considered. Low rates of FH detection are reported across all regions. National registries and education programmes to improve FH awareness/knowledge are a recognised priority, but funding is often lacking. In most countries, diagnosis primarily relies on the Dutch Lipid Clinics Network criteria. Although available in many countries, genetic testing is not widely implemented (frequent cost issues). There are only a few national official government programmes for FH. Under-treatment is an issue. FH therapy is not universally reimbursed. PCSK9-inhibitors are available in similar to 2/3 countries. Lipoprotein-apheresis is offered in similar to 60% countries, although access is limited. Conclusions: FH is a recognised public health concern. Management varies widely across countries, with overall suboptimal identification and under-treatment. Efforts and initiatives to improve FH knowledge and management are underway, including development of national registries, but support, particularly from health authorities, and better funding are greatly needed.
ER  -

Basic information
Original name	Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)
Authors	VALLEJO-VAZ, A.J. (826 United Kingdom of Great Britain and Northern Ireland), M. DE MARCO (826 United Kingdom of Great Britain and Northern Ireland), C.A.T. STEVENS (826 United Kingdom of Great Britain and Northern Ireland), A. AKRAM (404 Kenya), Tomáš FREIBERGER (203 Czech Republic, guarantor, belonging to the institution), G.K. HOVINGH (528 Netherlands), J.J.P. KASTELEIN (724 Spain), P. MATA (710 South Africa), F.J. RAAL (76 Brazil), R.D. SANTOS (36 Australia), H. SORAN (826 United Kingdom of Great Britain and Northern Ireland), G.F. WATTS (36 Australia), M. ABIFADEL (422 Lebanon), C.A. AGUILAR-SALINAS (484 Mexico), M. AL-KHNIFSAWI (368 Iraq), F.A. ALKINDI (634 Qatar), F. ALNOURI (682 Saudi Arabia), R. ALONSO (152 Chile), K. AL-RASADI (512 Oman), A. AL-SARRAF (414 Kuwait), T.F. ASHAVAID (356 India), C.J. BINDER (40 Austria), M.P. BOGSRUD (578 Norway), M. BOURBON (620 Portugal), E. BRUCKERT (250 France), K. CHLEBUS (616 Poland), P. CORRAL (32 Argentina), O. DESCAMPS (56 Belgium), R. DURST (376 Israel), M. EZHOV (643 Russian Federation), Z. FRAS (705 Slovenia), J. GENEST (124 Canada), U. GROSELJ (705 Slovenia), M. HARADA-SHIBA (392 Japan), M. KAYIKCIOGLU (792 Turkey), K. LALIC (688 Serbia), C.S.P. LAM (702 Singapore), G. LATKOVSKIS (440 Lithuania), U. LAUFS (276 Germany), E. LIBEROPOULOS (300 Greece), J. LIN (156 China), V. MAHER (372 Ireland), N. MAJANO (484 Mexico), A.D. MARAIS (710 South Africa), W. MARZ (276 Germany), E. MIRRAKHIMOV (40 Austria), A.R. MISEREZ (276 Germany), O. MITCHENKO (417 Kyrgyzstan), H.M. NAWAWI (756 Switzerland), B.G. NORDESTGAARD (208 Denmark), G. PARAGH (348 Hungary), Z. PETRULIONIENE (440 Lithuania), B. POJSKIC (70 Bosnia and Herzegovina), A. POSTADZHIYAN (100 Bulgaria), A. REDA (818 Egypt), Z. REINER (191 Croatia), W.E. SADOH (566 Nigeria), A. SAHEBKAR (364 Islamic Republic of Iran), A. SHEHAB (784 United Arab Emirates), A.B. SHEK (860 Uzbekistan), M. STOLL (858 Uruguay), T.C. SU (158 Taiwan), T. SUBRAMANIAM (702 Singapore), A.V. SUSEKOV (643 Russian Federation), P. SYMEONIDES (196 Cyprus), M. TILNEY (470 Malta), B. TOMLINSON (344 Hong Kong), T.H. TRUONG (704 Viet Nam), A.D. TSELEPIS (300 Greece), A. TYBJAERG-HANSENB (208 Denmark), A. VAZQUEZ-CARDENAS (484 Mexico), M. VIIGIMAA (233 Estonia), B. VOHNOUT (703 Slovakia), E. WIDEN (246 Finland), S. YAMASHITA (392 Japan), M. BANACH (616 Poland), D. GAITA (642 Romania), L.X. JIANG (156 China), L. NILSSON (752 Sweden), L.E. SANTOS (608 Philippines), H. SCHUNKERT (276 Germany), L. TOKGOZOGLU (792 Turkey), J. CAR (826 United Kingdom of Great Britain and Northern Ireland), A.L. CATAPANO (702 Singapore) and K.K. RAY (380 Italy).
Edition	Atherosclerosis, Clare, ELSEVIER SCI IRELAND LTD, 2018, 0021-9150.

Other information
Original language	English
Type of outcome	Article in a journal
Field of Study	30201 Cardiac and Cardiovascular systems
Country of publisher	Ireland
Confidentiality degree	is not subject to a state or trade secret
WWW	URL
Impact factor	Impact factor: 4.255
RIV identification code	RIV/00216224:14740/18:00106253
Organization unit	Central European Institute of Technology
Doi	http://dx.doi.org/10.1016/j.atherosclerosis.2018.08.051
UT WoS	000445908000037
Keywords in English	Familial hypercholesterolaemia; Primary dyslipidaemia; FHSC
Tags	rivok
Tags	International impact, Reviewed
Changed by	Changed by: Mgr. Pavla Foltynová, Ph.D., učo 106624. Changed: 13/3/2019 11:31.

Abstract

Background and aims: Management of familial hypercholesterolaemia (FH) may vary across different settings due to factors related to population characteristics, practice, resources and/or policies. We conducted a survey among the worldwide network of EAS FHSC Lead Investigators to provide an overview of FH status in different countries. Methods: Lead Investigators from countries formally involved in the EAS FHSC by mid-May 2018 were invited to provide a brief report on FH status in their countries, including available information, programmes, initiatives, and management. Results: 63 countries provided reports. Data on FH prevalence are lacking in most countries. Where available, data tend to align with recent estimates, suggesting a higher frequency than that traditionally considered. Low rates of FH detection are reported across all regions. National registries and education programmes to improve FH awareness/knowledge are a recognised priority, but funding is often lacking. In most countries, diagnosis primarily relies on the Dutch Lipid Clinics Network criteria. Although available in many countries, genetic testing is not widely implemented (frequent cost issues). There are only a few national official government programmes for FH. Under-treatment is an issue. FH therapy is not universally reimbursed. PCSK9-inhibitors are available in similar to 2/3 countries. Lipoprotein-apheresis is offered in similar to 60% countries, although access is limited. Conclusions: FH is a recognised public health concern. Management varies widely across countries, with overall suboptimal identification and under-treatment. Efforts and initiatives to improve FH knowledge and management are underway, including development of national registries, but support, particularly from health authorities, and better funding are greatly needed.

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