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. Chibbaro; Mary 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

doi:10.1597/11-138

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 journal › Article › peer-review

114 Scopus citations

Abstract

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 language	English (US)
Pages (from-to)	1S-24S
Journal	Cleft Palate-Craniofacial Journal
Volume	49
Issue number	1 SPEC. SUPPL
DOIs	https://doi.org/10.1597/11-138
State	Published - Jan 2012

Keywords

Craniosynostosis
Guidelines
Parameters
Treatment

ASJC Scopus subject areas

Oral Surgery
Otorhinolaryngology

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10.1597/11-138

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McCarthy, J. G., Warren, S. M., Bernstein, J., Burnett, W., Cunningham, M. L., Edmond, J. C., Figueroa, A. A., Kapp-Simon, K. A., Labow, B. I., Peterson-Falzone, S. J., Proctor, M. R., Rubin, M. S., Sze, R. W., Yemen, T. A., Arnaud, E., Bartlett, S. P., Blount, J. P., Boekelheide, A., Buchman, S. R., ... Wornom, I. L. (2012). Parameters of care for craniosynostosis. Cleft Palate-Craniofacial Journal, 49(1 SPEC. SUPPL), 1S-24S. https://doi.org/10.1597/11-138

McCarthy, JG, Warren, SM, Bernstein, J, Burnett, W, Cunningham, ML, Edmond, JC, Figueroa, AA, Kapp-Simon, KA, Labow, BI, Peterson-Falzone, SJ, Proctor, MR, Rubin, MS, Sze, RW, Yemen, TA, Arnaud, E, Bartlett, SP, Blount, JP, Boekelheide, A, Buchman, SR, Chibbaro, PD, Cradock, MM, Dipple, KM, Fearon, JA, Flannery, AM, Fong, CT, Fuchs, HE, Gittlen, M, Grayson, BH, Habal, MM, Havlik, RJ, Honberg, L, Jane, JA, Keating, R, Kelly, KJ, Kreiborg, S, McManus, ML, Miller, M, Muraszko, KM, Muzaffar, AR, Nackashi, JA, Plager, DA, Posada, L, Ririe, DG, Riski, JE, Rogers, GF, Shirley, JC, Simmons, KE, Sklenar, D, Speltz, M, Streubel, SO, Terrell, P, Tiwana, PS, Vargervik, K & Wornom, IL 2012, 'Parameters of care for craniosynostosis', Cleft Palate-Craniofacial Journal, vol. 49, no. 1 SPEC. SUPPL, pp. 1S-24S. https://doi.org/10.1597/11-138

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title = "Parameters of care for craniosynostosis",

abstract = "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.",

keywords = "Craniosynostosis, Guidelines, Parameters, Treatment",

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

year = "2012",

month = jan,

doi = "10.1597/11-138",

language = "English (US)",

volume = "49",

pages = "1S--24S",

journal = "Cleft Palate-Craniofacial Journal",

issn = "1055-6656",

publisher = "American Cleft Palate Craniofacial Association",

number = "1 SPEC. SUPPL",

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TY - JOUR

T1 - Parameters of care for craniosynostosis

AU - McCarthy, Joseph G.

AU - Warren, Stephen M.

AU - Bernstein, Joseph

AU - Burnett, Whitney

AU - Cunningham, Michael L.

AU - Edmond, Jane C.

AU - Figueroa, Alvaro A.

AU - Kapp-Simon, Kathleen A.

AU - Labow, Brian I.

AU - Peterson-Falzone, Sally J.

AU - Proctor, Mark R.

AU - Rubin, Marcie S.

AU - Sze, Raymond W.

AU - Yemen, Terrance A.

AU - Arnaud, Eric

AU - Bartlett, Scott P.

AU - Blount, Jeffrey P.

AU - Boekelheide, Anne

AU - Buchman, Steven R.

AU - Chibbaro, Patricia D.

AU - Cradock, Mary Michaeleen

AU - Dipple, Katrina M.

AU - Fearon, Jeffrey A.

AU - Flannery, Ann Marie

AU - Fong, Chin To

AU - Fuchs, Herbert E.

AU - Gittlen, Michelle

AU - Grayson, Barry H.

AU - Habal, Mutaz M.

AU - Havlik, Robert J.

AU - Honberg, Lynda

AU - Jane, John A.

AU - Keating, Robert

AU - Kelly, Kevin J.

AU - Kreiborg, Sven

AU - McManus, Michael L.

AU - Miller, Marilyn

AU - Muraszko, Karin M.

AU - Muzaffar, Arshad R.

AU - Nackashi, John A.

AU - Plager, David A.

AU - Posada, Laura

AU - Ririe, Douglas G.

AU - Riski, John E.

AU - Rogers, Gary F.

AU - Shirley, J. C.

AU - Simmons, Kirt E.

AU - Sklenar, Dennis

AU - Speltz, Matthew

AU - Streubel, Sven Olrik

AU - Terrell, Patricia

AU - Tiwana, Paul S.

AU - Vargervik, Karin

AU - Wornom, Isaac L.

PY - 2012/1

Y1 - 2012/1

N2 - 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.

AB - 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.

KW - Craniosynostosis

KW - Guidelines

KW - Parameters

KW - Treatment

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ER -

Parameters of care for craniosynostosis

Abstract

Keywords

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