Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries

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dc.contributor.authorHalim-Fikri, Bin Hashim
dc.contributor.authorLederer, Carsten W
dc.contributor.authorBaig, Atif Amin
dc.contributor.authorMat-Ghani, Siti Nor Assyuhada
dc.contributor.authorSyed-Hassan, Sharifah-Nany Rahayu-Karmilla
dc.contributor.authorYusof, Wardah
dc.contributor.authorAbdul Rashid, Diana
dc.contributor.authorAzman, Nurul Fatihah
dc.contributor.authorFucharoen, Suthat
dc.contributor.authorPanigoro, Ramdan
dc.contributor.authorSilao, Catherine Lynn T
dc.contributor.authorViprakasit, Vip
dc.contributor.authorJalil, Norunaluwar
dc.contributor.authorMohd Yasin, Norafiza
dc.contributor.authorBahar, Rosnah
dc.contributor.authorSelvaratnam, Veena
dc.contributor.authorMohamad, Norsarwany
dc.contributor.authorNik Hassan, Nik Norliza
dc.contributor.authorEsa, Ezalia
dc.contributor.authorKrause, Amanda
dc.contributor.authorRobinson, Helen
dc.contributor.authorHasler, Julia
dc.contributor.authorStephanou, Coralea
dc.contributor.authorRaja-Sabudin, Raja-Zahratul-Azma
dc.contributor.authorElion, Jacques
dc.contributor.authorEl-Kamah, Ghada
dc.contributor.authorCoviello, Domenico
dc.contributor.authorYusoff, Narazah
dc.contributor.authorAbdul Latiff, Zarina
dc.contributor.authorArnold, Chris
dc.contributor.authorBurn, John
dc.contributor.authorKountouris, Petros
dc.contributor.authorKleanthous, Marina
dc.contributor.authorRamesar, Raj
dc.contributor.authorZilfalil, Bin Alwi
dc.date.accessioned2022-04-23T20:32:27Z
dc.date.available2022-04-23T20:32:27Z
dc.date.issued2022-03-31
dc.date.updated2022-04-21T21:03:57Z
dc.description.abstractThe Global Globin Network (GGN) is a project-wide initiative of the Human Variome/Global Variome Project (HVP) focusing on haemoglobinopathies to build the capacity for genomic diagnosis, clinical services, and research in low- and middle-income countries. At present, there is no framework to evaluate the improvement of care, treatment, and prevention of thalassaemia and other haemoglobinopathies globally, despite thalassaemia being one of the most common monogenic diseases worldwide. Here, we propose a universally applicable system for evaluating and grouping countries based on qualitative indicators according to the quality of care, treatment, and prevention of haemoglobinopathies. We also apply this system to GGN countries as proof of principle. To this end, qualitative indicators were extracted from the IthaMaps database of the ITHANET portal, which allowed four groups of countries (A, B, C, and D) to be defined based on major qualitative indicators, supported by minor qualitative indicators for countries with limited resource settings and by the overall haemoglobinopathy carrier frequency for the target countries of immigration. The proposed rubrics and accumulative scores will help analyse the performance and improvement of care, treatment, and prevention of haemoglobinopathies in the GGN and beyond. Our proposed criteria complement future data collection from GGN countries to help monitor the quality of services for haemoglobinopathies, provide ongoing estimates for services and epidemiology in GGN countries, and note the contribution of the GGN to a local and global reduction of disease burden.en_US
dc.identifierdoi: 10.3390/jpm12040552
dc.identifier.apacitationHalim-Fikri, B. H., Lederer, C. W., Baig, A. A., Mat-Ghani, S. N. A., Syed-Hassan, S. R., Yusof, W., ... Zilfalil, B. A. (2022). Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries. <i>Journal of Personalized Medicine</i>, 12(4), 552. http://hdl.handle.net/11427/36386en_ZA
dc.identifier.chicagocitationHalim-Fikri, Bin Hashim, Carsten W Lederer, Atif Amin Baig, Siti Nor Assyuhada Mat-Ghani, Sharifah-Nany Rahayu-Karmilla Syed-Hassan, Wardah Yusof, Diana Abdul Rashid, et al "Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries." <i>Journal of Personalized Medicine</i> 12, 4. (2022): 552. http://hdl.handle.net/11427/36386en_ZA
dc.identifier.citationHalim-Fikri, B.H., Lederer, C.W., Baig, A.A., Mat-Ghani, S.N.A., Syed-Hassan, S.R., Yusof, W., Abdul Rashid, D. & Azman, N.F. et al. 2022. Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries. <i>Journal of Personalized Medicine.</i> 12(4):552. http://hdl.handle.net/11427/36386en_ZA
dc.identifier.ris TY - Journal Article AU - Halim-Fikri, Bin Hashim AU - Lederer, Carsten W AU - Baig, Atif Amin AU - Mat-Ghani, Siti Nor Assyuhada AU - Syed-Hassan, Sharifah-Nany Rahayu-Karmilla AU - Yusof, Wardah AU - Abdul Rashid, Diana AU - Azman, Nurul Fatihah AU - Fucharoen, Suthat AU - Panigoro, Ramdan AU - Silao, Catherine Lynn T AU - Viprakasit, Vip AU - Jalil, Norunaluwar AU - Mohd Yasin, Norafiza AU - Bahar, Rosnah AU - Selvaratnam, Veena AU - Mohamad, Norsarwany AU - Nik Hassan, Nik Norliza AU - Esa, Ezalia AU - Krause, Amanda AU - Robinson, Helen AU - Hasler, Julia AU - Stephanou, Coralea AU - Raja-Sabudin, Raja-Zahratul-Azma AU - Elion, Jacques AU - El-Kamah, Ghada AU - Coviello, Domenico AU - Yusoff, Narazah AU - Abdul Latiff, Zarina AU - Arnold, Chris AU - Burn, John AU - Kountouris, Petros AU - Kleanthous, Marina AU - Ramesar, Raj AU - Zilfalil, Bin Alwi AB - The Global Globin Network (GGN) is a project-wide initiative of the Human Variome/Global Variome Project (HVP) focusing on haemoglobinopathies to build the capacity for genomic diagnosis, clinical services, and research in low- and middle-income countries. At present, there is no framework to evaluate the improvement of care, treatment, and prevention of thalassaemia and other haemoglobinopathies globally, despite thalassaemia being one of the most common monogenic diseases worldwide. Here, we propose a universally applicable system for evaluating and grouping countries based on qualitative indicators according to the quality of care, treatment, and prevention of haemoglobinopathies. We also apply this system to GGN countries as proof of principle. To this end, qualitative indicators were extracted from the IthaMaps database of the ITHANET portal, which allowed four groups of countries (A, B, C, and D) to be defined based on major qualitative indicators, supported by minor qualitative indicators for countries with limited resource settings and by the overall haemoglobinopathy carrier frequency for the target countries of immigration. The proposed rubrics and accumulative scores will help analyse the performance and improvement of care, treatment, and prevention of haemoglobinopathies in the GGN and beyond. Our proposed criteria complement future data collection from GGN countries to help monitor the quality of services for haemoglobinopathies, provide ongoing estimates for services and epidemiology in GGN countries, and note the contribution of the GGN to a local and global reduction of disease burden. DA - 2022-03-31 DB - OpenUCT DP - University of Cape Town IS - 4 J1 - Journal of Personalized Medicine LK - https://open.uct.ac.za PY - 2022 T1 - Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries TI - Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries UR - http://hdl.handle.net/11427/36386 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/36386
dc.identifier.vancouvercitationHalim-Fikri BH, Lederer CW, Baig AA, Mat-Ghani SNA, Syed-Hassan SR, Yusof W, et al. Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries. Journal of Personalized Medicine. 2022;12(4):552. http://hdl.handle.net/11427/36386.en_ZA
dc.language.isoenen_US
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/en_US
dc.sourceJournal of Personalized Medicineen_US
dc.source.journalissue4en_US
dc.source.journalvolume12en_US
dc.source.pagination552en_US
dc.source.urihttps://www.mdpi.com/journal/jpm
dc.titleGlobal Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countriesen_US
dc.typeJournal Articleen_US
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