Prevalence at birth of cleft lip with or without cleft palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC)

Pierpaolo Mastroiacovo; Alice Maraschini; Emanuele Leoncini; Peter Mossey; Carol Bower; Eduardo E. Castilla; Marcia L. Feldkamp; Jane Halliday; Julian Little; Elisabeth Robert-Gnansia; Victor Boulyjenkov; John Harris; Helen Dolk; Elisa Calzolari; Simonetta Zezza; Lenore Abramsky; Marie Claude Addor; William Arias; Lihadh Al-Gazali; Emmanuelle Amar; Melissa A. Baker; Ingeborg Barisic; Sebastiano Bianca; David Bourne; Patricia Boyd; David Calder; Guido Cocchi; Glenn E. Copeland; Adolfo Correa; Melinda Csáky-Szunyogh; Maria Da Graça Dutra; Benn Daley; Monique Devolz; Catherine De Vigan; Hermien E.K. De Walle; Carlos Matias Dias; Berenice Doray; Jane Fornoff; Ester Garne; Miriam Gatt; Yves Gillerot; Martin Haeusler; Margaret Hilliard; Fumiki Hirahara; Jiri Horacek; Anna Latos-Bielenska; David J. Law; R. Brian Lowry; Leonora Luna; Robert McDonnell; Paul Merlob; Ruth D. Merz; Margery Morgan; Carmen Mosquera Tenreiro; Bridget S. Mosley; Osvaldo Mutchinick; Vera Nelen; Kay A. Pearson; Anna Pierini; Simone Poetzsch; Isabel Portillo; Annette Queisser-Luft; Jorma Rautio; Russell Rickard; Annukka Ritvanen; Rauf Sayed; Gioacchino Scarano; Csaba Siffel; Antonin Sípek; Elena Szabova; Romano Tenconi; Hanna Veazey; Eva Veghova; Diana Wellesley; Wladimir Wertelecki; Lyubov Yevtushock; Ludmila A. Zhuchenko

doi:10.1597/09-217

Prevalence at birth of cleft lip with or without cleft palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC)

Pierpaolo Mastroiacovo, Alice Maraschini, Emanuele Leoncini, Peter Mossey, Carol Bower, Eduardo E. Castilla, Marcia L. Feldkamp, Jane Halliday, Julian Little, Elisabeth Robert-Gnansia, Victor Boulyjenkov, John Harris, Helen Dolk, Elisa Calzolari, Simonetta Zezza, Lenore Abramsky, Marie Claude Addor, William Arias, Lihadh Al-Gazali, Emmanuelle AmarMelissa A. Baker, Ingeborg Barisic, Sebastiano Bianca, David Bourne, Patricia Boyd, David Calder, Guido Cocchi, Glenn E. Copeland, Adolfo Correa, Melinda Csáky-Szunyogh, Maria Da Graça Dutra, Benn Daley, Monique Devolz, Catherine De Vigan, Hermien E.K. De Walle, Carlos Matias Dias, Berenice Doray, Jane Fornoff, Ester Garne, Miriam Gatt, Yves Gillerot, Martin Haeusler, Margaret Hilliard, Fumiki Hirahara, Jiri Horacek, Anna Latos-Bielenska, David J. Law, R. Brian Lowry, Leonora Luna, Robert McDonnell, Paul Merlob, Ruth D. Merz, Margery Morgan, Carmen Mosquera Tenreiro, Bridget S. Mosley, Osvaldo Mutchinick, Vera Nelen, Kay A. Pearson, Anna Pierini, Simone Poetzsch, Isabel Portillo, Annette Queisser-Luft, Jorma Rautio, Russell Rickard, Annukka Ritvanen, Rauf Sayed, Gioacchino Scarano, Csaba Siffel, Antonin Sípek, Elena Szabova, Romano Tenconi, Hanna Veazey, Eva Veghova, Diana Wellesley, Wladimir Wertelecki, Lyubov Yevtushock, Ludmila A. Zhuchenko

Research output: Contribution to journal › Article › peer-review

301 Citations (Scopus)

Abstract

As part of a collaborative project on the epidemiology of craniofacial anomalies, funded by the National Institutes for Dental and Craniofacial Research and channeled through the Human Genetics Programme of the World Health Organization, the International Perinatal Database of Typical Orofacial Clefts (IPDTOC) was established in 2003. IPDTOC is collecting case-by-case information on cleft lip with or without cleft palate and on cleft palate alone from birth defects registries contributing to at least one of three collaborative organizations: European Surveillance Systems of Congenital Anomalies (EUROCAT) in Europe, National Birth Defects Prevention Network (NBDPN) in the United States, and International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) worldwide. Analysis of the collected information is performed centrally at the ICBDSR Centre in Rome, Italy, to maximize the comparability of results. The present paper, the first of a series, reports data on the prevalence of cleft lip with or without cleft palate from 54 registries in 30 countries over at least 1 complete year during the period 2000 to 2005. Thus, the denominator comprises more than 7.5 million births. A total of 7704 cases of cleft lip with or without cleft palate (7141 livebirths, 237 stillbirths, 301 terminations of pregnancy, and 25 with pregnancy outcome unknown) were available. The overall prevalence of cleft lip with or without cleft palate was 9.92 per 10,000. The prevalence of cleft lip was 3.28 per 10,000, and that of cleft lip and palate was 6.64 per 10,000. There were 5918 cases (76.8%) that were isolated, 1224 (15.9%) had malformations in other systems, and 562 (7.3%) occurred as part of recognized syndromes. Cases with greater dysmorphological severity of cleft lip with or without cleft palate were more likely to include malformations of other systems.

Original language	English
Pages (from-to)	66-81
Number of pages	16
Journal	Cleft Palate-Craniofacial Journal
Volume	48
Issue number	1
DOIs	https://doi.org/10.1597/09-217
Publication status	Published - Jan 2011

Keywords

Cleft lip and palate
Epidemiology
Oral clefts
Prevalence

ASJC Scopus subject areas

Oral Surgery
Otorhinolaryngology

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Mastroiacovo, P., Maraschini, A., Leoncini, E., Mossey, P., Bower, C., Castilla, E. E., Feldkamp, M. L., Halliday, J., Little, J., Robert-Gnansia, E., Boulyjenkov, V., Harris, J., Dolk, H., Calzolari, E., Zezza, S., Abramsky, L., Addor, M. C., Arias, W., Al-Gazali, L., ... Zhuchenko, L. A. (2011). Prevalence at birth of cleft lip with or without cleft palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC). Cleft Palate-Craniofacial Journal, 48(1), 66-81. https://doi.org/10.1597/09-217

Mastroiacovo, P, Maraschini, A, Leoncini, E, Mossey, P, Bower, C, Castilla, EE, Feldkamp, ML, Halliday, J, Little, J, Robert-Gnansia, E, Boulyjenkov, V, Harris, J, Dolk, H, Calzolari, E, Zezza, S, Abramsky, L, Addor, MC, Arias, W, Al-Gazali, L, Amar, E, Baker, MA, Barisic, I, Bianca, S, Bourne, D, Boyd, P, Calder, D, Cocchi, G, Copeland, GE, Correa, A, Csáky-Szunyogh, M, Dutra, MDG, Daley, B, Devolz, M, De Vigan, C, De Walle, HEK, Dias, CM, Doray, B, Fornoff, J, Garne, E, Gatt, M, Gillerot, Y, Haeusler, M, Hilliard, M, Hirahara, F, Horacek, J, Latos-Bielenska, A, Law, DJ, Lowry, RB, Luna, L, McDonnell, R, Merlob, P, Merz, RD, Morgan, M, Tenreiro, CM, Mosley, BS, Mutchinick, O, Nelen, V, Pearson, KA, Pierini, A, Poetzsch, S, Portillo, I, Queisser-Luft, A, Rautio, J, Rickard, R, Ritvanen, A, Sayed, R, Scarano, G, Siffel, C, Sípek, A, Szabova, E, Tenconi, R, Veazey, H, Veghova, E, Wellesley, D, Wertelecki, W, Yevtushock, L & Zhuchenko, LA 2011, 'Prevalence at birth of cleft lip with or without cleft palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC)', Cleft Palate-Craniofacial Journal, vol. 48, no. 1, pp. 66-81. https://doi.org/10.1597/09-217

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title = "Prevalence at birth of cleft lip with or without cleft palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC)",

abstract = "As part of a collaborative project on the epidemiology of craniofacial anomalies, funded by the National Institutes for Dental and Craniofacial Research and channeled through the Human Genetics Programme of the World Health Organization, the International Perinatal Database of Typical Orofacial Clefts (IPDTOC) was established in 2003. IPDTOC is collecting case-by-case information on cleft lip with or without cleft palate and on cleft palate alone from birth defects registries contributing to at least one of three collaborative organizations: European Surveillance Systems of Congenital Anomalies (EUROCAT) in Europe, National Birth Defects Prevention Network (NBDPN) in the United States, and International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) worldwide. Analysis of the collected information is performed centrally at the ICBDSR Centre in Rome, Italy, to maximize the comparability of results. The present paper, the first of a series, reports data on the prevalence of cleft lip with or without cleft palate from 54 registries in 30 countries over at least 1 complete year during the period 2000 to 2005. Thus, the denominator comprises more than 7.5 million births. A total of 7704 cases of cleft lip with or without cleft palate (7141 livebirths, 237 stillbirths, 301 terminations of pregnancy, and 25 with pregnancy outcome unknown) were available. The overall prevalence of cleft lip with or without cleft palate was 9.92 per 10,000. The prevalence of cleft lip was 3.28 per 10,000, and that of cleft lip and palate was 6.64 per 10,000. There were 5918 cases (76.8%) that were isolated, 1224 (15.9%) had malformations in other systems, and 562 (7.3%) occurred as part of recognized syndromes. Cases with greater dysmorphological severity of cleft lip with or without cleft palate were more likely to include malformations of other systems.",

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author = "Pierpaolo Mastroiacovo and Alice Maraschini and Emanuele Leoncini and Peter Mossey and Carol Bower and Castilla, {Eduardo E.} and Feldkamp, {Marcia L.} and Jane Halliday and Julian Little and Elisabeth Robert-Gnansia and Victor Boulyjenkov and John Harris and Helen Dolk and Elisa Calzolari and Simonetta Zezza and Lenore Abramsky and Addor, {Marie Claude} and William Arias and Lihadh Al-Gazali and Emmanuelle Amar and Baker, {Melissa A.} and Ingeborg Barisic and Sebastiano Bianca and David Bourne and Patricia Boyd and David Calder and Guido Cocchi and Copeland, {Glenn E.} and Adolfo Correa and Melinda Cs{\'a}ky-Szunyogh and Dutra, {Maria Da Gra{\c c}a} and Benn Daley and Monique Devolz and {De Vigan}, Catherine and {De Walle}, {Hermien E.K.} and Dias, {Carlos Matias} and Berenice Doray and Jane Fornoff and Ester Garne and Miriam Gatt and Yves Gillerot and Martin Haeusler and Margaret Hilliard and Fumiki Hirahara and Jiri Horacek and Anna Latos-Bielenska and Law, {David J.} and Lowry, {R. Brian} and Leonora Luna and Robert McDonnell and Paul Merlob and Merz, {Ruth D.} and Margery Morgan and Tenreiro, {Carmen Mosquera} and Mosley, {Bridget S.} and Osvaldo Mutchinick and Vera Nelen and Pearson, {Kay A.} and Anna Pierini and Simone Poetzsch and Isabel Portillo and Annette Queisser-Luft and Jorma Rautio and Russell Rickard and Annukka Ritvanen and Rauf Sayed and Gioacchino Scarano and Csaba Siffel and Antonin S{\'i}pek and Elena Szabova and Romano Tenconi and Hanna Veazey and Eva Veghova and Diana Wellesley and Wladimir Wertelecki and Lyubov Yevtushock and Zhuchenko, {Ludmila A.}",

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doi = "10.1597/09-217",

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T1 - Prevalence at birth of cleft lip with or without cleft palate

T2 - Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC)

AU - Mastroiacovo, Pierpaolo

AU - Maraschini, Alice

AU - Leoncini, Emanuele

AU - Mossey, Peter

AU - Bower, Carol

AU - Castilla, Eduardo E.

AU - Feldkamp, Marcia L.

AU - Halliday, Jane

AU - Little, Julian

AU - Robert-Gnansia, Elisabeth

AU - Boulyjenkov, Victor

AU - Harris, John

AU - Dolk, Helen

AU - Calzolari, Elisa

AU - Zezza, Simonetta

AU - Abramsky, Lenore

AU - Addor, Marie Claude

AU - Arias, William

AU - Al-Gazali, Lihadh

AU - Amar, Emmanuelle

AU - Baker, Melissa A.

AU - Barisic, Ingeborg

AU - Bianca, Sebastiano

AU - Bourne, David

AU - Boyd, Patricia

AU - Calder, David

AU - Cocchi, Guido

AU - Copeland, Glenn E.

AU - Correa, Adolfo

AU - Csáky-Szunyogh, Melinda

AU - Dutra, Maria Da Graça

AU - Daley, Benn

AU - Devolz, Monique

AU - De Vigan, Catherine

AU - De Walle, Hermien E.K.

AU - Dias, Carlos Matias

AU - Doray, Berenice

AU - Fornoff, Jane

AU - Garne, Ester

AU - Gatt, Miriam

AU - Gillerot, Yves

AU - Haeusler, Martin

AU - Hilliard, Margaret

AU - Hirahara, Fumiki

AU - Horacek, Jiri

AU - Latos-Bielenska, Anna

AU - Law, David J.

AU - Lowry, R. Brian

AU - Luna, Leonora

AU - McDonnell, Robert

AU - Merlob, Paul

AU - Merz, Ruth D.

AU - Morgan, Margery

AU - Tenreiro, Carmen Mosquera

AU - Mosley, Bridget S.

AU - Mutchinick, Osvaldo

AU - Nelen, Vera

AU - Pearson, Kay A.

AU - Pierini, Anna

AU - Poetzsch, Simone

AU - Portillo, Isabel

AU - Queisser-Luft, Annette

AU - Rautio, Jorma

AU - Rickard, Russell

AU - Ritvanen, Annukka

AU - Sayed, Rauf

AU - Scarano, Gioacchino

AU - Siffel, Csaba

AU - Sípek, Antonin

AU - Szabova, Elena

AU - Tenconi, Romano

AU - Veazey, Hanna

AU - Veghova, Eva

AU - Wellesley, Diana

AU - Wertelecki, Wladimir

AU - Yevtushock, Lyubov

AU - Zhuchenko, Ludmila A.

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N2 - As part of a collaborative project on the epidemiology of craniofacial anomalies, funded by the National Institutes for Dental and Craniofacial Research and channeled through the Human Genetics Programme of the World Health Organization, the International Perinatal Database of Typical Orofacial Clefts (IPDTOC) was established in 2003. IPDTOC is collecting case-by-case information on cleft lip with or without cleft palate and on cleft palate alone from birth defects registries contributing to at least one of three collaborative organizations: European Surveillance Systems of Congenital Anomalies (EUROCAT) in Europe, National Birth Defects Prevention Network (NBDPN) in the United States, and International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) worldwide. Analysis of the collected information is performed centrally at the ICBDSR Centre in Rome, Italy, to maximize the comparability of results. The present paper, the first of a series, reports data on the prevalence of cleft lip with or without cleft palate from 54 registries in 30 countries over at least 1 complete year during the period 2000 to 2005. Thus, the denominator comprises more than 7.5 million births. A total of 7704 cases of cleft lip with or without cleft palate (7141 livebirths, 237 stillbirths, 301 terminations of pregnancy, and 25 with pregnancy outcome unknown) were available. The overall prevalence of cleft lip with or without cleft palate was 9.92 per 10,000. The prevalence of cleft lip was 3.28 per 10,000, and that of cleft lip and palate was 6.64 per 10,000. There were 5918 cases (76.8%) that were isolated, 1224 (15.9%) had malformations in other systems, and 562 (7.3%) occurred as part of recognized syndromes. Cases with greater dysmorphological severity of cleft lip with or without cleft palate were more likely to include malformations of other systems.

AB - As part of a collaborative project on the epidemiology of craniofacial anomalies, funded by the National Institutes for Dental and Craniofacial Research and channeled through the Human Genetics Programme of the World Health Organization, the International Perinatal Database of Typical Orofacial Clefts (IPDTOC) was established in 2003. IPDTOC is collecting case-by-case information on cleft lip with or without cleft palate and on cleft palate alone from birth defects registries contributing to at least one of three collaborative organizations: European Surveillance Systems of Congenital Anomalies (EUROCAT) in Europe, National Birth Defects Prevention Network (NBDPN) in the United States, and International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) worldwide. Analysis of the collected information is performed centrally at the ICBDSR Centre in Rome, Italy, to maximize the comparability of results. The present paper, the first of a series, reports data on the prevalence of cleft lip with or without cleft palate from 54 registries in 30 countries over at least 1 complete year during the period 2000 to 2005. Thus, the denominator comprises more than 7.5 million births. A total of 7704 cases of cleft lip with or without cleft palate (7141 livebirths, 237 stillbirths, 301 terminations of pregnancy, and 25 with pregnancy outcome unknown) were available. The overall prevalence of cleft lip with or without cleft palate was 9.92 per 10,000. The prevalence of cleft lip was 3.28 per 10,000, and that of cleft lip and palate was 6.64 per 10,000. There were 5918 cases (76.8%) that were isolated, 1224 (15.9%) had malformations in other systems, and 562 (7.3%) occurred as part of recognized syndromes. Cases with greater dysmorphological severity of cleft lip with or without cleft palate were more likely to include malformations of other systems.

KW - Cleft lip and palate

KW - Epidemiology

KW - Oral clefts

KW - Prevalence

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Prevalence at birth of cleft lip with or without cleft palate: Data from the International Perinatal Database of Typical Oral Clefts (IPDTOC)

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