{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["Halim-Fikri BH"],"funding":["European Regional Development Fund and the Republic of Cyprus","Ministry of International Trade and Industry (MITI), Malaysia","International Collaboration Fund, Ministry of Science, Technology and Innovation (MOSTI), Ma-laysia"],"pagination":["552"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC9032232"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["12(4)"],"pubmed_abstract":["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 "],"journal":["Journal of personalized medicine"],"pubmed_title":["Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries."],"pmcid":["PMC9032232"],"funding_grant_id":["304.PPSP.6150166.K151","EXCELLENCE/1216/256","305.PPSP.6114202"],"pubmed_authors":["Halim-Fikri BH","Bahar R","Krause A","Panigoro R","Lederer CW","Yusoff N","Mohamad N","Silao CLT","Mat-Ghani SNA","Coviello D","Abdul Rashid D","Nik Hassan NN","Mohd Yasin N","El-Kamah G","Arnold C","Syed-Hassan SR","Elion J","Burn J","Robinson H","Hasler J","Abdul Latiff Z","Kountouris P","Ramesar R","Jalil N","Stephanou C","Selvaratnam V","Zilfalil BA","Kleanthous M","Azman NF","Esa E","Raja-Sabudin RZ","Baig AA","Viprakasit V","On Behalf Of The Global Globin Network Ggn","Fucharoen S","Yusof W"],"additional_accession":[]},"is_claimable":false,"name":"Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries.","description":"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 ","dates":{"release":"2022-01-01T00:00:00Z","publication":"2022 Mar","modification":"2025-05-29T21:25:41.229Z","creation":"2024-11-08T15:39:44.791Z"},"accession":"S-EPMC9032232","cross_references":{"pubmed":["35455667"],"doi":["10.3390/jpm12040552"]}}