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 Iran

Iran

Continent:	Asia
Capital:	Tehran
Population:	76923300
Area (in sq km):	1648000.0

Haemoglobinopathy-specific healthcare policy information for Iran

Healthcare policy		Comment/Info	Reference
Prevention programme:	Yes (National)	Based on premarital/preconception screening, since 1997. Mandatory.	[PMID: 24669933]
SCD newborn screening:	No	Pilot regional studies. From [IJBC, 2011, 2(4):117]; [IJPHO, 2018, 8(2):105]
Prenatal screening:	Yes (National)	Since 2003.	[PMID: 24669933]
Haemoglobinopathies patient registry:	Yes (National)	National Thalassemia Registry established in 2001. Regional Electronic Thalassemia Registry for Mazandaran established in 2016.	[PMID: 17414565]
Dedicated treatment centres:	Yes (National)	More than 200 thalassaemia treatment centres across Iran.	[PMID: 17414565]
Blood transfusion availability:	Yes (National)	The Iranian Blood Transfusion Organization.	[PMID: 17414565]
Iron chelation availability:	Yes (National)		[PMID: 17414565]
Patient associations:	Yes (National)	Iranian Thalassemia Society, established in 1989.
Genetic counselling:	Yes (National)	As part of premarital screening programme.	[PMID: 11773575]

Prevalence and incidence of major haemoglobinopathies in Iran

Haemoglobinopathy		Comment/Info	Reference
Prevalence of β-thalassaemia carriers:	6 % of the population		[PMID: 24672827]
Prevalence of sickle cell disease carriers:	1.4 % of the population	Pilot NBS study in Ahvaz, Khoramshahr, Sosangerd, Dezful (2013-2015) [From: IJPHO, 2018, 8(2):105]
Prevalence of α-thalassaemia carriers:	30 % of the population	Other studies report a carrier frequency of about 15%.	[PMID: 26865931]
Prevalence of Hb C carriers:	0.047 % of the population	Pilot NBS study in Ahvaz, Khoramshahr, Sosangerd, Dezful (2013-2015) [From: IJPHO, 2018, 8(2):105]
Expected incidence of β-thalassaemia:	1027 expected affected births/year		[PMID: 24672827]
Expected incidence of sickle cell disease:	371 expected affected births/year		[PMID: 24672827]
Incidence of sickle cell disease:	862 affected births/year	Median value estimated using statistical model and demographic data.	[PMID: 23103089]
Known β-thalassaemia patients:	18616 patients		[PMID: 24672827]

Global Burden of Disease data for Iran

Migration data for Iran

Mutation frequencies in Iran

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

α-locus

-α3.7 (type I): 65.9 % (45.6 % – 81.6 %)	-α4.2: 7.22 % (1.66 % – 25 %)
IVS I-1 (-5 bp) GAGGTGAGG>GAGG----- donor: 6.44 % (1.29 % – 15.47 %)	Poly A (AATAAA>AATGAA): 6.19 % (1.14 % – 15.3 %)

β-locus

IVS I-5 (G>C): 35.95 % (3.6 % – 87.2 %)	IVS II-1 G>A: 25.93 % (25.61 % – 26.24 %)
IVS II-1 G>A: 18.92 % (0.45 % – 61 %)	CD 36/37 (-T): 8.95 % (0.64 % – 33.8 %)

Detailed mutation frequencies

Entry ID	Locus	Region	Ethnic Group	Population Type	Sample Size	Study period (from)	Study period (to)	Reference	Comments
23315	β-locus	Khuzestan	Iranian	Carriers	555	2008	2013	34178757	Frequencies are shown for beta-globin gene mutations. Samples were recruited from Dezful district and belonged to five different races; Fars (29.7%), Bakhtiary (30.6%), Lur (23.4%), Arab (9.4%), Kord (3.2%) and other races (2.9%).
23316	β-locus	Hamadan	Fars, Lor, Turkish	Patients	82		2017	28391758	Frequencies are shown for beta-globin gene mutations. Samples were recruited from Besat Hospital in Hamadan.
23317	β-locus	Mazandaran	Iranian	Carriers	1635		2011	21493114	Frequencies are shown for beta-globin gene mutations.
23318	α-locus	Kohkeloye and Boyer Ahmad	Iranian	Carriers	1195		2012	22401170	Frequencies are shown for alpha-globin gene mutations. Samples originated from two southern provinces, Fars and Kohkeloye and Bouyer Ahmad, and were collected during premarital screening in Shiraz.
23319	α-locus	Fars	Iranian	Carriers	1195		2012	22401170	Frequencies are shown for alpha-globin gene mutations. Samples originated from two southern provinces, Fars and Kohkeloye and Bouyer Ahmad, and were collected during premarital screening in Shiraz.
23320	β-locus	Sistan and Balouchestan	Iranian	Patients	94	2012	2013	27117567	Frequencies are shown for beta-globin gene mutations and were re-calculated by Ithanet. Samples were beta-thalassemia intermedia patients.
23321	α-locus	Mazandaran	Iranian	Carriers	68		2012	24074530	Frequencies are shown for alpha-globin gene mutations and were calculated by Ithanet. Samples were collected from a delivery unit in Sari. Analysis was performed only for common mutations. The --MED deletion was not observed.
23322	β-locus	Sistan and Balouchestan	Balouch	Carriers	3094	2002	2010	21692087	Frequencies are shown for beta-globin gene mutations. Samples were collected at Aliasghar Hospital in Zahedan University of Medical Sciences, Zahedan.
23323	β-locus	Lorestan	Lurs	Patients	130		2007	17654071	Frequencies are shown for beta-globin gene mutations.
23324	β-locus	Hormozgan	Iranian	Patients	314		2001	11300348	Frequencies are shown for beta-globin gene mutations and were calculated by Ithanet. Samples were collected at the Thalassemia Medical Centre of Bandar Abbas. They represent beta-thalassaemia major patients.
23325	β-locus	Khorasan-e Jonubi	Iranian	Carriers	133	2002	2011	22920564	Frequencies are shown for beta-globin gene mutations. Samples were collected at the Thalassemia Prenatal Diagnosis Center at the Ali-Asghar Hospital, Zahedan.
23326	β-locus	Kerman	Iranian	Carriers	266	2006	2007	23113009	Frequencies are shown for beta-globin gene mutations. Samples originated from the cities Bam, Jiroft, Kahnooj, Kerman, Baft, Rafsanjan, Bardsir and Sirjan.
23327	β-locus	Sistan and Balouchestan	Sistani	Carriers	557	2002	2011	23437895	Frequencies are shown for beta-globin gene mutations. Samples were collected at the Prenatal Diagnosis Centre at Ali-Asghar Hospital, Zahedan. Most were Shiites and the remainded were Sunnis.
23328	α-locus	North Iran	Iranian	Carriers and Patients	1296	1997	2015	28385057	Frequencies are shown for alpha-globin gene mutations. Samples originated from Mazandaran (n=1084), Golestan (n=81), Khorasan (n=69) and Gilan (n=27) in the northern region of Iran, and were collected from the Genetic Laboratory of Amirkola Children Hospital, Babol. Most were carriers, while 105 were homozygotes or compound heterozygotes for mutations.
23329	α-locus	Lorestan	Lak	Carriers	181	2009	2019	31304855	Frequencies are shown for alpha-globin gene mutations. Samples originated from the west and northwest counties of Lorestan Province (56 from Delfan and Selseleh, 105 from Kuhdasht and Rumeshkan, and 15 from Khorramabad).
23330	α-locus	Kurdistan	Kurdish	Carriers	155	2009	2019	32588682	Frequencies are shown for alpha-globin gene mutations. Samples originated from the southern part of Kurdistan province (the counties of Sanandaj, Qorveh, Dehgolan, Marivan, Sarvabad and Kamyaran) and were collected at Kermanshah Central Laboratory.
23331	α-locus	Ilam	Kurdish	Carriers	228	2009	2019	32072847	Frequencies are shown for alpha-globin gene mutations. Samples originated from northern counties of Ilam Province (Eyvan, Cthardavol, Sirvan, Ilam, Malekshahi, Mehran) and were collected at Kermanshah Central Laboratory.
23332	β-locus	Hamadan	Iranian	Carriers	282	2009	2018	31096791	Frequencies are shown for beta-globin gene mutations. Samples were collected at the Kermanshah Central Laboratory.
23333	α-locus	Isfahan	Multi-ethnic	Carriers	309	2010	2012	24826792	Frequencies are shown for alpha-globin gene mutations and were recalculated by Ithanet. Study samples represent referrals from the Genetics Laboratory, Alzahra University Hospital and consist of unrelated Fars, Bakhtiari Lurs, Armenians and Qashqais individuals who all resided in the province.
23334	α-locus	East Azerbaijan	Azeris	Patients	702	2014	2016	27690152	Frequencies are shown for alpha-globin mutations and were calculated by Ithanet.
23335	β-locus	Country-wide	Iranian	Carriers and Patients	1217	1992	2001	11570721	Frequencies are shown for beta-globin gene mutations. Study samples were acquired from different regions of Iran.
23336	β-locus	Central	Iranian	Carriers and Patients	257	1992	2001	11570721	Frequencies are shown for beta-globin gene mutations.

Organisations in Iran

A list of all organisations in Iran stored in the ITHANET database is shown below. For more information, click on the corresponding organisation name or visit the detailed ITHANET Organisations page

Name	Department	Organisation type
Kariminejad & Najmabadi Pathology and Genetics Center		Research Center, Medical Center, Diagnostic Center
Pasteur Institute of Iran (IPI)		Research Center, Diagnostic Center

Microattributions

No microattibutions were provided for Iran. 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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