Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries
Issued Date
2022-04-01
Resource Type
eISSN
20754426
Scopus ID
2-s2.0-85132105342
Journal Title
Journal of Personalized Medicine
Volume
12
Issue
4
Rights Holder(s)
SCOPUS
Bibliographic Citation
Journal of Personalized Medicine Vol.12 No.4 (2022)
Suggested Citation
Halim-Fikri B.H., Lederer C.W., Baig A.A., Mat-Ghani S.N.A., Syed-Hassan S.N.R.K., Yusof W., Rashid D.A., Azman N.F., Fucharoen S., Panigoro R., Silao C.L.T., Viprakasit V., Jalil N., Yasin N.M., Bahar R., Selvaratnam V., Mohamad N., Hassan N.N.N., Esa E., Krause A., Robinson H., Hasler J., Stephanou C., Raja-Sabudin R.Z.A., Elion J., El-Kamah G., Coviello D., Yusoff N., Latiff Z.A., Arnold C., Burn J., Kountouris P., Kleanthous M., Ramesar R., Zilfalil B.A. Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries. Journal of Personalized Medicine Vol.12 No.4 (2022). doi:10.3390/jpm12040552 Retrieved from: https://repository.li.mahidol.ac.th/handle/20.500.14594/87331
Title
Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries
Author(s)
Halim-Fikri B.H.
Lederer C.W.
Baig A.A.
Mat-Ghani S.N.A.
Syed-Hassan S.N.R.K.
Yusof W.
Rashid D.A.
Azman N.F.
Fucharoen S.
Panigoro R.
Silao C.L.T.
Viprakasit V.
Jalil N.
Yasin N.M.
Bahar R.
Selvaratnam V.
Mohamad N.
Hassan N.N.N.
Esa E.
Krause A.
Robinson H.
Hasler J.
Stephanou C.
Raja-Sabudin R.Z.A.
Elion J.
El-Kamah G.
Coviello D.
Yusoff N.
Latiff Z.A.
Arnold C.
Burn J.
Kountouris P.
Kleanthous M.
Ramesar R.
Zilfalil B.A.
Lederer C.W.
Baig A.A.
Mat-Ghani S.N.A.
Syed-Hassan S.N.R.K.
Yusof W.
Rashid D.A.
Azman N.F.
Fucharoen S.
Panigoro R.
Silao C.L.T.
Viprakasit V.
Jalil N.
Yasin N.M.
Bahar R.
Selvaratnam V.
Mohamad N.
Hassan N.N.N.
Esa E.
Krause A.
Robinson H.
Hasler J.
Stephanou C.
Raja-Sabudin R.Z.A.
Elion J.
El-Kamah G.
Coviello D.
Yusoff N.
Latiff Z.A.
Arnold C.
Burn J.
Kountouris P.
Kleanthous M.
Ramesar R.
Zilfalil B.A.
Author's Affiliation
Siriraj Hospital
Université Paris Cité
Institut Perubatan & Pergigian Termaju
National Institutes of Health, University of the Philippines Manila
Universiti Sultan Zainal Abidin
BioGrid Australia
University of the Witwatersrand Faculty of Health Sciences
University of the Philippines College of Medicine
Cyprus Institute of Neurology and Genetics
Universitas Padjadjaran
Universiti Sains Malaysia, Health Campus
Hospital Canselor Tuanku Muhriz UKM
University of Melbourne
Istituto Giannina Gaslini
National Research Centre
Institute of Molecular Biosciences, Mahidol University
International Centre for Life
School of Medical Sciences, Universiti Sains Malaysia
Universiti Kebangsaan Malaysia
University of Cape Town
Ampang Hospital
National Institutes of Health
Université Paris Cité
Institut Perubatan & Pergigian Termaju
National Institutes of Health, University of the Philippines Manila
Universiti Sultan Zainal Abidin
BioGrid Australia
University of the Witwatersrand Faculty of Health Sciences
University of the Philippines College of Medicine
Cyprus Institute of Neurology and Genetics
Universitas Padjadjaran
Universiti Sains Malaysia, Health Campus
Hospital Canselor Tuanku Muhriz UKM
University of Melbourne
Istituto Giannina Gaslini
National Research Centre
Institute of Molecular Biosciences, Mahidol University
International Centre for Life
School of Medical Sciences, Universiti Sains Malaysia
Universiti Kebangsaan Malaysia
University of Cape Town
Ampang Hospital
National Institutes of Health
Other Contributor(s)
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 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.