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 and the local principal investigators and study coordinators are listed below:

University of California, Irvine
Cedars-Sinai Hospital, Los Angeles
Phone: (949) 824-0521 Phone: 310-423-9935
Fax: (949) 824-6388
Pennsylvania State University 
Children's Hospital Los Angeles
Joan Richtsmeier, Ph.D, Principal Investigator
University of Southern California
Phone: 814-865-2509
Pedro A. Sanchez-Lara, M.D., Principal Investigator
Phone: 323-361-1854
University of California, San Francisco (UCSF)
Jon Bernstein MD, PhD, Principal Investigator
Ophir Klein, M.D. Ph.D, Principal Investigator
Louanne Hudgins, MD, Co- investigator
Phone: 415-476-4719
Phone: 650-723-6858
Fax: 415-476-9513
Fax: 650-498-4555
Seattle Children's 
Golisano Children's Hospital
Clinton Morrison, MD
Phone: 206-987-0184
Phone: 585-275-1000
Andrew Wilkie, M.D. Maria Rita Passos-Bueno, MD                   
Weatherall Institute of Molecular Medicine University of Sao Paolo, Brazil
Oxford, United Kingdom  
Bernd Wollnik, MD Emil Simoenov, MD  
Institute of Human Genetics Medical University
University of Cologne, Cologne, Germany Sofia, Bulgaria
Email: Email:
Phone: +49-221-478 86817
FAX: +49-221-478 86812
Tony Roscioli, M.D. Eva Olah, M.D., Ph.D., D.Sc. and Beata Bessenyei, M.Sc.
Department of Molecular Genetics Institute of Pediatrics, Clinical Genetic Center
Royal Prince Alfred Hospital Medical and Health Science Center
The University of Sidney, Australia University of Debrecen, Hungary
Phone: +3652-255-072
Fax +3652-255-446
Wanda Lattanzi, MD PhD Erika Kague, PhD
Institute of Anatomy and Cell Biology Biomedical Sciences
Universita' Cattolica del Sacro Cuore University of Bristol
School of Medicine, Rome IT Bristol, UK
Email: Email: