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 journalArticlepeer-review

288 Citations (Scopus)


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 languageEnglish
Pages (from-to)66-81
Number of pages16
JournalCleft Palate-Craniofacial Journal
Issue number1
Publication statusPublished - Jan 2011


  • Cleft lip and palate
  • Epidemiology
  • Oral clefts
  • Prevalence

ASJC Scopus subject areas

  • Oral Surgery
  • Otorhinolaryngology


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