Demographics of consanguinity in Palestinians with orofacial clefts: a non-randomised longitudinal study

Orofacial clefts (OFCs) are the most common craniofacial malformation at birth worldwide, with an incidence of 1·05 out of 1000 live births in the occupied Palestinian territory. The majority of OFCs present as singletons (without a family history of clefts), and a minority present as multiplex case...

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Published in:The Lancet (British edition) 2019-03, Vol.393, p.S55-S55
Main Authors: Zawahrah, Hassan J, Moore, Meredith G, Saeed, Omar, Tayem, Moath, Shahin, Hashem, van Aalst, John A
Format: Article
Language:English
Subjects:
Birth
Chi-square test
Children
Cleft lip/palate
Congenital anomalies
Congenital defects
Consanguinity
Correlation analysis
Demographics
Demography
Genetics
Incidence
Longitudinal studies
Multiplexing
Orofacial clefts
Parents
Patients
Polls & surveys
Randomization
Statistical analysis
Surgery
Territory
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container_title The Lancet (British edition)
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creator Zawahrah, Hassan J
Moore, Meredith G
Saeed, Omar
Tayem, Moath
Shahin, Hashem
van Aalst, John A
description Orofacial clefts (OFCs) are the most common craniofacial malformation at birth worldwide, with an incidence of 1·05 out of 1000 live births in the occupied Palestinian territory. The majority of OFCs present as singletons (without a family history of clefts), and a minority present as multiplex cases (greater than one OFC in the family). Consanguineous marriages (marriage between blood relatives) among Palestinians is approximately 40%. This study aims to define the incidence and impact of multiplicity in Palestinians with OFC, and to determine how his may be related to rates of consanguinity. We conducted a non-randomised longitudinal study using a 700-question survey administered in colloquial Arabic to mothers of patients with congenital anomalies (including patients with any craniofacial anomaly). Volunteer researchers fluent in English and Arabic were trained to recruit participants and administer surveys during craniofacial surgery screening events in Palestinian Government Hospitals. Selection criteria were a child in the family with an orofacial cleft, and family consent for participation in the survey. In a non-probability sampling method, the frequency of OFC in immediate and distant family members, and the extent of consanguineous marriages, were documented. Comparisons were made using chi squared tests; p
doi_str_mv 10.1016/S0140-6736(19)30641-5
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The majority of OFCs present as singletons (without a family history of clefts), and a minority present as multiplex cases (greater than one OFC in the family). Consanguineous marriages (marriage between blood relatives) among Palestinians is approximately 40%. This study aims to define the incidence and impact of multiplicity in Palestinians with OFC, and to determine how his may be related to rates of consanguinity. We conducted a non-randomised longitudinal study using a 700-question survey administered in colloquial Arabic to mothers of patients with congenital anomalies (including patients with any craniofacial anomaly). Volunteer researchers fluent in English and Arabic were trained to recruit participants and administer surveys during craniofacial surgery screening events in Palestinian Government Hospitals. Selection criteria were a child in the family with an orofacial cleft, and family consent for participation in the survey. In a non-probability sampling method, the frequency of OFC in immediate and distant family members, and the extent of consanguineous marriages, were documented. Comparisons were made using chi squared tests; p&lt;0·05 was considered statistically significant. The study methods and questionnaire were approved by the Institutional Review Board of Cincinnati Children's Hospital Medical Complex (IRB 2015-0607). Informed written consent was obtained from participants and legal guardians. Of 613 completed surveys, 536 reported OFC, among whom 265 families (46%) reported another family member with a cleft, and 271 did not. Among multiplex families, 26% of OFCs (69 of 265) were in first-degree relatives (parents or siblings), 74% (196) in distant relatives, and 15% (39) in both. Nearly half of the patients from multiplex families (118) represented 42 families with multiple clefts. Compared with families in which only one member had a cleft, patients from multiplex families were more likely to be diagnosed with a cleft lip (29% vs 18%; p&lt;0·01), less likely to be diagnosed with a cleft lip and palate (37% vs 48%; p=0·02), and had a similar likelihood of being diagnosed with a cleft palate alone. Patients from multiplex families were more likely to come from Hebron (52%) than from any other city in the West Bank (39%; p&lt;0·01), and were more likely to have family members with non-cleft birth anomalies (61% vs 13%; p&lt;0·001). Parents of children with clefts in a multiplex family were more likely to be consanguineous (related to each other) than parents of singletons (60% vs 40%; p&lt;0·01). The percentage of multiplex families (46%) in this study appears to be higher than reported previously from the Middle East (including Iran and Saudi Arabia). There also appears to be a higher rate of consanguinity among multiplex families than reported previously, especially among those families with an additional sibling diagnosed with a cleft lip. National Institute of Dental and Craniofacial Research (NIDCR) R56.</description><identifier>ISSN: 0140-6736</identifier><identifier>EISSN: 1474-547X</identifier><identifier>DOI: 10.1016/S0140-6736(19)30641-5</identifier><language>eng</language><publisher>London: Elsevier Ltd</publisher><subject>Birth ; Chi-square test ; Children ; Cleft lip/palate ; Congenital anomalies ; Congenital defects ; Consanguinity ; Correlation analysis ; Demographics ; Demography ; Genetics ; Incidence ; Longitudinal studies ; Multiplexing ; Orofacial clefts ; Parents ; Patients ; Polls &amp; surveys ; Randomization ; Statistical analysis ; Surgery ; Territory</subject><ispartof>The Lancet (British edition), 2019-03, Vol.393, p.S55-S55</ispartof><rights>2019 Elsevier Ltd</rights><rights>2019. Elsevier Ltd</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,776,780,27901,27902</link.rule.ids></links><search><creatorcontrib>Zawahrah, Hassan J</creatorcontrib><creatorcontrib>Moore, Meredith G</creatorcontrib><creatorcontrib>Saeed, Omar</creatorcontrib><creatorcontrib>Tayem, Moath</creatorcontrib><creatorcontrib>Shahin, Hashem</creatorcontrib><creatorcontrib>van Aalst, John A</creatorcontrib><title>Demographics of consanguinity in Palestinians with orofacial clefts: a non-randomised longitudinal study</title><title>The Lancet (British edition)</title><description>Orofacial clefts (OFCs) are the most common craniofacial malformation at birth worldwide, with an incidence of 1·05 out of 1000 live births in the occupied Palestinian territory. The majority of OFCs present as singletons (without a family history of clefts), and a minority present as multiplex cases (greater than one OFC in the family). Consanguineous marriages (marriage between blood relatives) among Palestinians is approximately 40%. This study aims to define the incidence and impact of multiplicity in Palestinians with OFC, and to determine how his may be related to rates of consanguinity. We conducted a non-randomised longitudinal study using a 700-question survey administered in colloquial Arabic to mothers of patients with congenital anomalies (including patients with any craniofacial anomaly). Volunteer researchers fluent in English and Arabic were trained to recruit participants and administer surveys during craniofacial surgery screening events in Palestinian Government Hospitals. Selection criteria were a child in the family with an orofacial cleft, and family consent for participation in the survey. In a non-probability sampling method, the frequency of OFC in immediate and distant family members, and the extent of consanguineous marriages, were documented. Comparisons were made using chi squared tests; p&lt;0·05 was considered statistically significant. The study methods and questionnaire were approved by the Institutional Review Board of Cincinnati Children's Hospital Medical Complex (IRB 2015-0607). Informed written consent was obtained from participants and legal guardians. Of 613 completed surveys, 536 reported OFC, among whom 265 families (46%) reported another family member with a cleft, and 271 did not. Among multiplex families, 26% of OFCs (69 of 265) were in first-degree relatives (parents or siblings), 74% (196) in distant relatives, and 15% (39) in both. Nearly half of the patients from multiplex families (118) represented 42 families with multiple clefts. Compared with families in which only one member had a cleft, patients from multiplex families were more likely to be diagnosed with a cleft lip (29% vs 18%; p&lt;0·01), less likely to be diagnosed with a cleft lip and palate (37% vs 48%; p=0·02), and had a similar likelihood of being diagnosed with a cleft palate alone. Patients from multiplex families were more likely to come from Hebron (52%) than from any other city in the West Bank (39%; p&lt;0·01), and were more likely to have family members with non-cleft birth anomalies (61% vs 13%; p&lt;0·001). Parents of children with clefts in a multiplex family were more likely to be consanguineous (related to each other) than parents of singletons (60% vs 40%; p&lt;0·01). The percentage of multiplex families (46%) in this study appears to be higher than reported previously from the Middle East (including Iran and Saudi Arabia). There also appears to be a higher rate of consanguinity among multiplex families than reported previously, especially among those families with an additional sibling diagnosed with a cleft lip. 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The majority of OFCs present as singletons (without a family history of clefts), and a minority present as multiplex cases (greater than one OFC in the family). Consanguineous marriages (marriage between blood relatives) among Palestinians is approximately 40%. This study aims to define the incidence and impact of multiplicity in Palestinians with OFC, and to determine how his may be related to rates of consanguinity. We conducted a non-randomised longitudinal study using a 700-question survey administered in colloquial Arabic to mothers of patients with congenital anomalies (including patients with any craniofacial anomaly). Volunteer researchers fluent in English and Arabic were trained to recruit participants and administer surveys during craniofacial surgery screening events in Palestinian Government Hospitals. Selection criteria were a child in the family with an orofacial cleft, and family consent for participation in the survey. In a non-probability sampling method, the frequency of OFC in immediate and distant family members, and the extent of consanguineous marriages, were documented. Comparisons were made using chi squared tests; p&lt;0·05 was considered statistically significant. The study methods and questionnaire were approved by the Institutional Review Board of Cincinnati Children's Hospital Medical Complex (IRB 2015-0607). Informed written consent was obtained from participants and legal guardians. Of 613 completed surveys, 536 reported OFC, among whom 265 families (46%) reported another family member with a cleft, and 271 did not. Among multiplex families, 26% of OFCs (69 of 265) were in first-degree relatives (parents or siblings), 74% (196) in distant relatives, and 15% (39) in both. Nearly half of the patients from multiplex families (118) represented 42 families with multiple clefts. Compared with families in which only one member had a cleft, patients from multiplex families were more likely to be diagnosed with a cleft lip (29% vs 18%; p&lt;0·01), less likely to be diagnosed with a cleft lip and palate (37% vs 48%; p=0·02), and had a similar likelihood of being diagnosed with a cleft palate alone. Patients from multiplex families were more likely to come from Hebron (52%) than from any other city in the West Bank (39%; p&lt;0·01), and were more likely to have family members with non-cleft birth anomalies (61% vs 13%; p&lt;0·001). Parents of children with clefts in a multiplex family were more likely to be consanguineous (related to each other) than parents of singletons (60% vs 40%; p&lt;0·01). The percentage of multiplex families (46%) in this study appears to be higher than reported previously from the Middle East (including Iran and Saudi Arabia). There also appears to be a higher rate of consanguinity among multiplex families than reported previously, especially among those families with an additional sibling diagnosed with a cleft lip. National Institute of Dental and Craniofacial Research (NIDCR) R56.</abstract><cop>London</cop><pub>Elsevier Ltd</pub><doi>10.1016/S0140-6736(19)30641-5</doi><oa>free_for_read</oa></addata></record>
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subjects Birth
Chi-square test
Children
Cleft lip/palate
Congenital anomalies
Congenital defects
Consanguinity
Correlation analysis
Demographics
Demography
Genetics
Incidence
Longitudinal studies
Multiplexing
Orofacial clefts
Parents
Patients
Polls & surveys
Randomization
Statistical analysis
Surgery
Territory
title Demographics of consanguinity in Palestinians with orofacial clefts: a non-randomised longitudinal study
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