Parameters of care for craniosynostosis

Joseph G. McCarthy, Stephen M. Warren, Joseph Bernstein, Whitney Burnett, Michael L. Cunningham, Jane C. Edmond, Alvaro A. Figueroa, Kathleen A. Kapp-Simon, Brian I. Labow, Sally J. Peterson-Falzone, Mark R. Proctor, Marcie S. Rubin, Raymond W. Sze, Terrance A. Yemen, Eric Arnaud, Scott P. Bartlett, Jeffrey P. Blount, Anne Boekelheide, Steven R. Buchman, Patricia D. ChibbaroMary Michaeleen Cradock, Katrina M. Dipple, Jeffrey A. Fearon, Ann Marie Flannery, Chin To Fong, Herbert E. Fuchs, Michelle Gittlen, Barry H. Grayson, Mutaz M. Habal, Robert J. Havlik, Lynda Honberg, John A. Jane, Robert Keating, Kevin J. Kelly, Sven Kreiborg, Michael L. McManus, Marilyn Miller, Karin M. Muraszko, Arshad R. Muzaffar, John A. Nackashi, David A. Plager, Laura Posada, Douglas G. Ririe, John E. Riski, Gary F. Rogers, J. C. Shirley, Kirt E. Simmons, Dennis Sklenar, Matthew Speltz, Sven Olrik Streubel, Patricia Terrell, Paul S. Tiwana, Karin Vargervik, Isaac L. Wornom

Research output: Contribution to journalArticlepeer-review

117 Scopus citations


Background: A multidisciplinary meeting was held from March 4 to 6, 2010, in Atlanta, Georgia, entitled "Craniosynostosis: Developing Parameters for Diagnosis, Treatment, and Management." The goal of this meeting was to create parameters of care for individuals with craniosynostosis. Methods: Fifty-two conference attendees represented a broad range of expertise, including anesthesiology, craniofacial surgery, dentistry, genetics, hand surgery, neurosurgery, nursing, ophthalmology, oral and maxillofacial surgery, orthodontics, otolaryngology, pediatrics, psychology, public health, radiology, and speech-language pathology. These attendees also represented 16 professional societies and peer-reviewed journals. The current state of knowledge related to each discipline was reviewed. Based on areas of expertise, four breakout groups were created to reach a consensus and draft specialtyspecific parameters of care based on the literature or, in the absence of literature, broad clinical experience. In an iterative manner, the specialty-specific draft recommendations were presented to all conference attendees. Participants discussed the recommendations in multidisciplinary groups to facilitate exchange and consensus across disciplines. After the conference, a pediatric intensivist and social worker reviewed the recommendations. Results: Consensus was reached among the 52 conference attendees and two post hoc reviewers. Longitudinal parameters of care were developed for the diagnosis, treatment, and management of craniosynostosis in each of the 18 specialty areas of care from prenatal evaluation to adulthood. Conclusions: To our knowledge, this is the first multidisciplinary effort to develop parameters of care for craniosynostosis. These parameters were designed to help facilitate the development of educational programs for the patient, families, and health-care professionals; stimulate the creation of a national database and registry to promote research, especially in the area of outcome studies; improve credentialing of interdisciplinary craniofacial clinical teams; and improve the availability of health insurance coverage for all individuals with craniosynostosis.

Original languageEnglish
Pages (from-to)1S-24S
JournalCleft Palate-Craniofacial Journal
Issue number1 SPEC. SUPPL
StatePublished - Jan 2012
Externally publishedYes


  • Craniosynostosis
  • Guidelines
  • Parameters
  • Treatment


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