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 leased below:

 

University of Washington, Seattle Children's Hospital Boston                                               
Michael Cunningham, M.D., Ph.D., Principal Investigator Joan Stoler, M.D., Principal Investigator
Children's Hospital & Regional Medical Center Research Coordinator: Heidi Hallman
Research Coordinator: Verena Aziz Email: Heidi.Hallman@childrens.harvard.edu
Email: verena.aziz@seattlechildrens.org  
Phone: 206-884-1428  
Fax: 206-884-1407  

 

University of California, Irvine Cedars-Sinai Hospital, Los Angeles
Virginia Kimonis, M.D., Principal Investigator John Graham M.D., Sc.D., Principal Investigator
Genetic Counselor and Research Coordinator: Alisara Ateerat Genetic Counselor and Research Coordinator: Nancy Kramer
Email: alisara@genetic-counseling.org Email: Nancy.Kramer@cshs.org
Phone: (949) 824-0521 Phone: 310-423-9935
Fax: (949) 824-6388  

 

Pennsylvania State University                                                                Children's Hospital Los Angeles and University of Southern California
Joan Richtsmeier, Ph.D, Principal Investigator Pedro A. Sanchez-Lara, M.D., Principal Investigator
Research Assistant: Satama Sirivunnabood Research coordinator:
Email: szs194@psu.edu Email:
Contacts: Kim Miller Phone: 323-361-1854
Email: kqm4@psu.edu Fax:323-361-4764
Phone: 814-865-2509  

 

Stanford University                                                                           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 Email: ophir.klein@ucsf.edu
Genetic Counselor: Leah Slattery Genetic Counselor / Clinical Research Coordinator: Cecilia Fairley
Email: lslattery@lpch.org Email: Cecilia.Fairley@ucsf.edu
Phone: 650-723-6858 Phone: (415)476-4719
Fax: 650-498-4555 Fax: (415)476-9513
   

 

Golisano Children's Hospital  
Clinton Morrison, MD  
Research Coordinator: Melisande J McCheyne, PNP  
Email: Melisande_Mccheyne@urmc.rochester.edu  
Phone: (585) 275-1000  
   

 

 

 

 

 

 

International Collaborators:

Andrew Wilkie, M.D. Maria Rita Passos-Bueno, MD                   
Weatherall Institute of Molecular Medicine University of Sao Paolo, Brazil
Oxford, United Kingdom  
Research Coordinator: Julia Phipps  
Email: julie.phipps@ouh.nhs.uk  

 

Bernd Wollnik, MD Emil Simoenov, MD                                   
Institute of Human Genetics Medical University
University of Cologne, Cologne, Germany Sofia, Bulgaria
Email: bwollnik@uni-koeln.de Email: simeonov.emilg@gmail.com
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
  Email: bbessenyei@med.unideb.hu
  Phone: +3652-255-072
  Fax +3652-255-446

 

Wanda Lattanzi, MD PhD  
Institute of Anatomy and Cell Biology  
Universita' Cattolica del Sacro Cuore  
School of Medicine, Rome IT  
Email: wanda.lattanzi@rm.unicatt.it  
Research Coordinator: Marta Barba, PhD  
Email: marta.barba@rm.unicatt.it  
Ph: +39 06 30154915 - 4711  
Fax: +39 06 30154813