International Craniosynostosis Consortium

The International Craniosynostosis Consortium (ICC) includes physicians and scientists with special expertise and interests in craniosynostosis. The ICC web site and databases are hosted on a secure server at the University of California, Davis and are maintained under Dr. Simeon Boyd’s approved IRB protocol. Our goal is to enroll and characterize as many affected families as possible in order to create clinical databases and sample repositories that will allow us to better understand and prevent craniosynostosis. We encourage both medical professionals and patients to contact us in order to contribute to our mission and to receive information about craniosynostosis. The ICC is supported through a NIH-NIDCR research grant R01 DE016886 to Dr. Simeon Boyd. The study sites are leased below:

University of Washington, Seattle
Children’s Hospital & Regional Medical Center

Children’s Hospital Boston
Joan Stoler, M.D., Principal Investigator

University of California, Irvine
Virginia Kimonis, M.D., Principal Investigator

Johns Hopkins University, Baltimore, MD and Mount Sinai Hospital, New York
Ethylin Wang Jabs, M.D., Principal Investigator

Cedars-Sinai Hospital, Los Angeles
John Graham M.D., Sc.D., Principal Investigator

Pennsylvania State University
Joan Richtsmeier, Ph.D, Principal Investigator

Children’s Hospital Los Angeles and University of Southern California

Stanford University

University of California, San Francisco (UCSF)
Ophir Klein, M.D. Ph.D, Principal Investigator

University of Iowa, Department of Epidemiology S416 CPHB
Paul Romitti, Ph.D.

International Collaborators:
Andrew Wilkie, M.D.
The Weatherall Institute of Molecular Medicine
Oxford, United Kingdom
Maria Rita Passos-Bueno, MD
University of Sao Paolo, Brazil
Bernd Wollnik, MD
Institute of Human Genetics, University of Cologne, Cologne, Germany
Tony Roscioli, M.D.
Department of Molecular Genetics, Royal Prince Alfred Hospital, The University of Sidney, Australia
Eva Olah, M.D., Ph.D., D.Sc. and Beata Bessenyei, M.Sc.
Clinical Genetic Center, Medical and Health Science Center, University of Debrecen, Hungary
Wanda Lattanzi, MD PhD
Institute of Anatomy and Cell Biology , Universita’ Cattolica del Sacro Cuore, School of Medicine, Rome IT


Useful links:

Site of ICC