IthaMaps

Welcome to IthaMaps

IthaMaps is a global epidemiology database of heamoglobinopathies, illustrating published data on a dynamic global to regional map. Country-specific information on haemoglobinopathy-related policies, prevalence, incidence and overall disease burden is given, including relative allele frequencies of specific globin mutations in each country and/or region, dynamically linked to corresponding IthaGenes entries.

IthaMaps content was supported by partnership with the HVP Global Globin 2020 Challenge

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General information for Indonesia

Indonesia

Continent:	Asia
Capital:	Jakarta
Population:	242968342
Area (in sq km):	1919440.0

Haemoglobinopathy-specific healthcare policy information for Indonesia

Healthcare policy		Comment/Info	Reference
Prevention programme:	Yes (Regional)	As pilot prevention programmes since 1998, with government involvement in 2009.	[PMID: 27040959]
SCD newborn screening:	No	SCD is not included in the national NBS program [www.labsystemsdx.com]	[PMID: 33072985]
Prenatal screening:	Yes (Regional)	Voluntary. PND for high-risk couples is rarely performed.	[PMID: 27040959]
Antenatal screening:	Yes (Regional)	Since 1998. From: Thalassaemia Reports 2012, TIF Pan-Asian Conference.
Haemoglobinopathies patient registry:	Yes (Regional)	Lack of a national registry and data fragmentation. Separate databases are available in major thalassaemia centres such as the Cipto Mangunkusumo Hospital, which is a national referral hospital [From: WHO South-East Asia 2021 report, ISBN: 978-92-9022-851-6]
Rare disease patient registry:	No		[PMID: 27484654]
Dedicated treatment centres:	Yes (National)
Blood transfusion availability:	Yes (National)	National blood services meet only half of the blood demand, and there is unequal distribution of blood supply [From: WHO South-East Asia 2021 report, ISBN: 978-92-9022-851-6]
Iron chelation availability:	Yes (National)	Free iron chelation therapy (DFO, DFP, DFX) for thalassaemia patients, but not all patients receive optimum treatment.	[PMID: 27040959]
MRI facilities:	Yes (Regional)	In major centres. From: TIF report on South East Asian Nations, Aug. 2013.
Patient associations:	Yes (National)	Indonesian Thalassaemia Foundation/Association of Parents of Thalassaemia Patients Indonesia (YTI/POPTI)

Prevalence and incidence of major haemoglobinopathies in Indonesia

Haemoglobinopathy		Comment/Info	Reference
Prevalence of β-thalassaemia carriers:	5 % of the population	Extends between 3-10%.	[PMID: 27040959]
Prevalence of α-thalassaemia carriers:	3 % of the population	Extends between 3-20% [From: WHO South-East Asia 2021 report, ISBN: 978-92-9022-851-6]
Prevalence of Hb E carriers:	6 % of the population	Extends between 1-33%. From: WHO South-East Asia 2021 report, ISBN: 978-92-9022-851-6
Expected incidence of β-thalassaemia:	9619 expected affected births/year		[PMID: 24672827]
Incidence of sickle cell disease:	1 affected births/year	Median value estimated using statistical model and demographic data.	[PMID: 23103089]
Known β-thalassaemia patients:	5000 patients		[PMID: 24672827]

Global Burden of Disease data for Indonesia

Migration data for Indonesia

Mutation frequencies in Indonesia

Overview (most frequent mutations with their observed average values and range)

β-locus

CD 26 GAG>AAG [Glu>Lys] (HbE): 34.05 % (18.06 % – 48.4 %)	IVS I-5 (G>C): 28.31 % (16.1 % – 44.4 %)
CD 36 CCT>C-T: 7.33 % (1.39 % – 17.6 %)	CD 15 (-T): 5.9 %

Detailed mutation frequencies

Entry ID	Locus	Region	Ethnic Group	Population Type	Sample Size	Study period (to)	Reference	Comments
23528	β-locus	Kalimantan Timur	Multi-ethnic	Patients	62	2020	31890591	Frequencies are shown for beta-globin gene mutations in patients with β-thalassemia in Samarinda, East Kalimantan. The majority were Javanese (64.5%), followed by Banjarese (12.9%), Buginese (9.7%), Kutai Malay (6.5%), and Toraja and Sundanese (3.2% each).
23529	β-locus	Central Java	Javanese	Patients	418	2015	26291967	Frequencies are shown for beta-globin gene mutations. Samples were collected from the Banyumas Residency, a southwest region of Central Java Province.
23530	β-locus	East Java	Indonesian	Patients	34	2011	22188014	Frequencies are shown for beta-globin gene mutations. Samples were collected from the Dr. Soetomo Hospital, Surabaya.
23531	β-locus	Country-wide	Javanese, Sudanese, Betavianese, Buginese, Makasarese, Sumatranese	Patients	112	1998	10096953	Frequencies are shown for beta-globin gene mutations. Samples originated mainly from three regions; Java (n=80%, Javanese, Sudanese and Betavianese), Celebes (14%, Buginese and Makasarese), and Sumatra (n=5.5%, Sumatranese).
23532	β-locus	Jakarta	Indonesian	Patients	72	1989	2589324	Frequencies are shown for beta-globin gene mutations. Study samples were acquired from the the thalassaemia clinic of the Department of Child Health, University of Indonesia Medical School, Jakarta.

Organisations in Indonesia

Organisations in Indonesia are currently not available

Microattributions

No microattibutions were provided for Indonesia. Please contact us, if you are willing to review existing information or provide new data.

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Important Note: The relative allele frequencies presented in IthaMaps are not calculated by ITHANET, but they are extracted from the corresponding publications. ITHANET is not responsible for any mistakes in the data. Please use this information with caution! We encourage scientists that have more detailed or updated epidemiological information to contact us.

Disclaimer: The information on this website is provided as an information resource only and must not to be used as a substitute for professional diagnosis and treatment. The ITHANET Portal and IthaMaps are not responsible or liable for any advice, course of treatment, diagnosis or any other information, services or products that an individual obtains through this website.

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Healthcare Policies

Health-policy	Select one Answer	Comment
Prevention programme
SCD newborn screening
Prenatal screening
Antenatal screening
Haemoglobinopathies patient registry
Rare disease patient registry
Dedicated treatment centres
Blood transfusion availability
Iron chelation availability
MRI facilities
Patient associations
Genetic counselling

Status of major Haemoglobinopathies

In Expected Incidence of β-thalassaemia and sickle cell disease please provide the number of expected affected births/year (without prevention).
In Incidence of β-thalassaemia and sickle cell disease please provide the number of affected births/year (after prevention).

Haemoglobinopathy	Provide value		Comment
Prevalence of β-thalassaemia carriers		% of the population
Prevalence of sickle cell disease carriers		% of the population
Prevalence of α-thalassaemia carriers		% of the population
Prevalence of Hb E carriers		% of the population
Prevalence of Hb C carriers		% of the population
Expected incidence of β-thalassaemia		expected affected births/year
Expected incidence of sickle cell disease		expected affected births/year
Expected incidence of α-thalassaemia		expected affected births/year
Incidence of β-thalassaemia		affected births/year
Incidence of sickle cell disease		affected births/year
Incidence of α-thalassaemia		affected births/year
Known β-thalassaemia patients		patients
Known sickle cell disease patients		patients

Mutation Frequencies

Please provide details about publications reporting mutation frequencies in the country of reference (either country-wide studies or region-specific studies).

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