Siti Nor Assyuhada Mat-Ghani

Ms. Siti Nor Assyuhada Mat-Ghani


Research Focus & Metrics

Academic Career Length

5Years (2022-Present)

(Calculated once Scilit publication data is synced: current year − year of first publication + 1)

Representative Publications

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Journal Article
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BHBin Hashim Halim-Fikri
Bin Hashim Halim-Fikri
Carsten Werner LedererCarsten Werner Lederer
Carsten Werner Lederer
ABAtif Baig
Atif Baig
SMSiti Nor Assyuhada Mat-Ghani
Siti Nor Assyuhada Mat-Ghani
SSSharifah-Nany Rahayu-Karmilla Syed-Hassan
Sharifah-Nany Rahayu-Karmilla Syed-Hassan
O(on behalf of the Global Globin Network (GGN)
on behalf of the Global Globin Network (GGN)
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.