Updated Guideline on Treatment and Management of Craniosynostosis
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Contents CHAPTER 1. INTRODUCTION The first version of the Dutch guideline for care and treatment of patients with craniosynostosis was established in 2010 and published in 2015.1 The Dutch Society for Plastic and Reconstructive Surgery initiated the revision of this guideline, to update it according to the most recent scientific literature. This second version has been approved by all participating societies in 2020. All chapters from the previous version were revised and new topics on prenatal detection and speech and language development were introduced. REFERENCES 1. Mathijssen IMJ. Guideline for care of patients with the diagnoses of craniosynostosis: Working group on craniosynostosis. J Craniofac Surg 2015:26:1735-1807. CHAPTER 2. METHODOLOGY FOR GUIDELINE DEVELOPMENT Input of Patient Perspective The patient perspective was taken into account by asking the Patient Federation Netherlands for written input on bottlenecks and points for attention in the preparatory phase. They forwarded the request for the submission of bottlenecks to LAPOSA and Stichting Kind en Ziekenhuis (Child and Hospital Foundation). No bottlenecks were submitted. In addition, the chair of LAPOSA had a seat in the working group. During the comment phase, the draft guideline was also presented to the Patient Federation Netherlands, LAPOSA and Foundation Child and Hospital. For information: A focus group meeting had been organized during the development of the guideline in 2010 (see Appendix 1, https://links.lww.com/SCS/B832). This report is still valid. Method Employed by the Working Group Procedure in 2010 The content of this guideline is based on evidence from published scientific research. Relevant articles were identified using systematic searches in Medline, Embase, and the Cochrane Library. Existing guidelines were specifically searched for in online accessible (international and national guideline clearinghouses). Searches were limited to the Dutch, English and French languages. In addition, articles were extracted from reference lists of relevant literature. This resulted for several basic questions in additional articles. Care for children with craniosynostosis was introduced in the late 1960 s, and consequently the English literature from those years onwards was included. Searches were performed until 1 December 2009 and articles available as “Epub ahead of publication” at that date were included as well. Regarding all basic questions, patient categories were defined in a uniform way. The following search terms were used: craniofacial, craniosynostosis combined with: genetics, hydrocephalus, Chiari, cerebral pressure, otitis, hearing, vision, psychology, anesthesia, complications, infection, development, growth, maxilla, mandible, distraction, osteotomy, Fort, midface, RED, halo, monobloc, facial bipartition, median fasciotomy, hypertelorism. The complete search strategies are available on request. Relevant articles extracted from reference lists of retrieved literature and several relevant publications until 1 November 2009 were included as well. Ongoing research was left out of consideration. Under the headings Summary of the literature / Conclusions only published studies / guidelines are discussed. Case reports and letters were excluded, unless they reported a complication. The selected articles were assessed on methodological quality graded by level of evidence according to the standard classification: see Table 1. After selection, those articles remained that are listed to underpin the various conclusions. The articles are assessed under the heading ‘Summary of the literature’. Next, the scientific evidence was briefly summarized in a ‘Conclusion’. The main literature on which a conclusion is based was mentioned as well, including the level of evidence (see Table 2). Other aspects than scientific evidence may be relevant to making a recommendation as well, such as patient preferences (derived from the results of the focus group sessions or relevant literature on the patient perspective), costs, availability, or organizational aspects. These kinds of aspects, provided they have not been subject of research, were mentioned under the heading ‘Considerations’. The experience and the opinion of the working group members have been key to the other considerations. The ‘Recommendation’ results from the combination of the available evidence and the other considerations. Procedure in 2017/2018 AGREE This guideline has been revised in accordance with the requirements according to the report Medical Specialist Guidelines 2.0 of the Advisory Committee on Guidelines of the Council for Quality (www.kwaliteitskoepel.nl). This report is based on the AGREE II instrument (Appraisal of Guidelines for Research & Evaluation II) (www.agreecollaboration.org), which is an internationally widely accepted instrument, and on ’guidelines for guideline’ for assessing the quality of guidelines (www.cvz.nl). Bottleneck Analysis During the preparator
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Surgical approaches for craniosynostosis have evolved from simple linear craniectomies to more complex cranial vault reconstructions and minimally invasive approaches.
“Surgical approaches have evolved from simple linear craniectomies to more complex cranial vault reconstructions (CVR) as well as minimal invasive approaches, highlighting continued efforts to refine treatment approaches for this complex condition [1, 6].”
From Developments in diagnostic and surgical techniques in children with sagittal suture craniosynostosis: a systematic review spanning the last 30 years (2025) · cites this paper as [6]
Chapter 5 (Conclusions; page unavailable) says that many techniques have been described since the first craniosynostosis operation and distinguishes minimally invasive surgery from open correction of a large part of the skull. It discusses strip craniectomy and open cranial correction, but does not establish the claimed historical progression from simple linear craniectomies to cranial vault reconstruction and minimally invasive approaches. (LLM, conf=0.82)
Experimental — accuracy not yet measuredThe effective use of these technologies requires specialized expertise for accurate interpretation.
“The effective use of these technologies still requires specialized expertise for accurate interpretation and further appropriate treatment recommendations based on the latest research findings [2, 6].”
From Developments in diagnostic and surgical techniques in children with sagittal suture craniosynostosis: a systematic review spanning the last 30 years (2025) · cites this paper as [6]
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Treatment of the Syndromic Midface: A Long-Term Assessment at Skeletal Maturity
Patel, N., & Fearon, J. (2015) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0000000000001062 · Cited by 45
Driessen, C., Bannink, N., Lequin, M., van Veelen, M. V., Naus, N., Joosten, K., & Mathijssen, I. (2011) · Journal of Neurosurgery: Pediatrics · doi:10.3171/2011.6.peds10547 · Cited by 45 · see citing works
Self-citationAnolik, R. A., Allori, A., Pourtaheri, N., Rogers, G., & Marcus, J. (2016) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0000000000002052 · Cited by 44
Facial Growth in Patients with Apert and Crouzon Syndromes Compared to Normal Children
Reitsma, J., Ongkosuwito, E., Buschang, P., & Prahl-Andersen, B. (2012) · The Cleft Palate-Craniofacial Journal · doi:10.1597/10-021 · Cited by 44 · see citing works
Eley, K., Johnson, D. W., Wilkie, A. O., Jayamohan, J., Richards, P., & Wall, S. (2012) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e318267d5ae · Cited by 43 · see citing works
Luna-Paredes, C., Antón-Pacheco, J., Hernández, G. G., Gimeno, A. M., García, A. R. R., & Recuero, I. I. G. (2012) · International Journal of Pediatric Otorhinolaryngology · doi:10.1016/j.ijporl.2012.08.020 · Cited by 42
Adenotonsillectomy for Sleep-Disordered Breathing in Children With Syndromic Craniosynostosis
Amonoo-Kuofi, K., Phillips, S., Randhawa, P., Lane, R., Wyatt, M., & Leighton, S. (2009) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0b013e3181bd2c9a · Cited by 42 · see citing works
Bonfield, C., Lee, P. S., Adamo, M. A., & Pollack, I. (2014) · Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery · doi:10.1016/j.jcms.2014.01.036 · Cited by 41 · see citing works
Czerwiński, M., Kolar, J. C., & Fearon, J. (2011) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e3182268ca6 · Cited by 40 · see citing works
Ocular phenotype correlations in patients with TWIST versus FGFR3 genetic mutations.
Jadico, S. K., Huebner, A., McDonald-McGinn, D., Zackai, E., & Young, T. (2006) · Journal of AAPOS · doi:10.1016/j.jaapos.2006.06.008 · Cited by 40 · see citing works
Health-related problems and quality of life in patients with syndromic and complex craniosynostosis
de Jong, T., Maliepaard, M., Bannink, N., Raat, H., & Mathijssen, I. (2012) · Child's Nervous System · doi:10.1007/s00381-012-1681-4 · Cited by 39 · see citing works
Self-citationOphthalmic findings in apert syndrome prior to craniofacial surgery.
Khong, J., Anderson, P., Gray, T., Hammerton, M., Selva, D., & David, D. (2006) · American journal of ophthalmology-glaucoma · doi:10.1016/j.ajo.2006.02.046 · Cited by 39 · see citing works
Complications in 54 Frontofacial Distraction Procedures in Patients With Syndromic Craniosynostosis
Goldstein, J., Paliga, J. T., Taylor, J. A., & Bartlett, S. (2015) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000001320 · Cited by 38 · see citing works
Driessen, C., van Veelen, M. V., Lequin, M., Joosten, K., & Mathijssen, I. (2012) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e31825dc1f1 · Cited by 38 · see citing works
Self-citationReformation of the sagittal suture following surgery for isolated sagittal craniosynostosis.
Agrawal, D., Steinbok, P., & Cochrane, D. (2006) · Journal of Neurosurgery · doi:10.3171/ped.2006.105.2.115 · Cited by 38 · see citing works
Rijken, B., den Ottelander, B. D., van Veelen, M. V., Lequin, M., & Mathijssen, I. (2015) · Neurosurgical Focus · doi:10.3171/2015.2.focus14846 · Cited by 37 · see citing works
Self-citationHearing loss in syndromic craniosynostoses: otologic manifestations and clinical findings.
Agochukwu, N., Solomon, B., & Muenke, M. (2014) · International Journal of Pediatric Otorhinolaryngology · doi:10.1016/j.ijporl.2014.09.019 · Cited by 36 · see citing works
Scott, W., Fearon, J., Swift, D., & Sacco, D. (2013) · Journal of Neurosurgery: Pediatrics · doi:10.3171/2013.4.peds12463 · Cited by 36
Behavioral Adjustment of Toddler and Preschool-Aged Children with Single-Suture Craniosynostosis
Kapp-Simon, K., Collett, B., Barr-Schinzel, M. A., Cradock, M., Buono, L., Pietila, K. E., & Speltz, M. L. (2012) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e31825dc18b · Cited by 36 · see citing works
Pattern of Closure of Skull Base Synchondroses in Crouzon Syndrome.
Coll, G., Sakka, L., Botella, C., Pham-Dang, N., Collet, C., Zérah, M., Arnaud, É., & Rocco, F. D. (2018) · World Neurosurgery · doi:10.1016/j.wneu.2017.09.208 · Cited by 36 · see citing works
Seruya, M., Tan, S. Y., Wray, A. C., Penington, A. J., Greensmith, A. L., Holmes, A. D., & Chong, D. K. (2013) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e31829f4b3d · Cited by 35 · see citing works
Fischer, S., Maltese, G., Tarnow, P., Wikberg, E., Bernhardt, P., & Kölby, L. (2016) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000002519 · Cited by 35 · see citing works
Intracranial hypertension after surgical correction for craniosynostosis: a systematic review.
Christian, E., Imahiyerobo, T. A., Nallapa, S., Urata, M., McComb, J., & Krieger, M. D. (2015) · Neurosurgical Focus · doi:10.3171/2015.2.focus14853 · Cited by 35 · see citing works
Jadico, S. K., Young, D., Huebner, A., Edmond, J., Pollock, A., McDonald-McGinn, D., Li, Y.-J., Zackai, E., & Young, T. (2006) · Journal of AAPOS · doi:10.1016/j.jaapos.2006.07.012 · Cited by 35 · see citing works
Delayed synostoses of uninvolved sutures after surgical treatment of nonsyndromic craniosynostosis
Yarbrough, C. K., Smyth, M. D., Holekamp, T. F., Ranalli, N. J., Huang, A. H., Patel, K. B., Kane, A. A., & Woo, A. S. (2014) · Journal of Craniofacial Surgery · doi:10.1097/scs.0b013e3182a75102 · Cited by 35 · see citing works
van Veelen, M. V., Jippes, M., Carolina, J. A., de Rooi, J. D., Dirven, C., Adrichem, L. V. V., & Mathijssen, I. (2016) · Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery · doi:10.1016/j.jcms.2016.07.029 · Cited by 34 · see citing works
Self-citationSpring-assisted surgery in the treatment of sagittal synostosis: A systematic review
Maltese, G., Fischer, S., Strandell, A., Tarnow, P., & Kölby, L. (2015) · Journal of Plastic Surgery and Hand Surgery · doi:10.3109/2000656x.2014.981268 · Cited by 34 · see citing works
Ophthalmic Findings in Children With Nonsyndromic Craniosynostosis Treated by Expansion Cranioplasty
Chung, S.-A., Yun, I., Moon, J., & Lee, J. (2015) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000001238 · Cited by 34
Optical coherence tomography: a quantitative tool to screen for papilledema in craniosynostosis
Driessen, C., Eveleens, J. R. J., Bleyen, I., van Veelen, M. V., Joosten, K., & Mathijssen, I. (2014) · Child's Nervous System · doi:10.1007/s00381-014-2376-9 · Cited by 34 · see citing works
Self-citationMetopic “ridge” vs. “craniosynostosis”: Quantifying severity with 3D curvature analysis
Cho, M., Kane, A. A., Seaward, J. R., & Hallac, R. R. (2016) · Journal of Cranio-Maxillofacial Surgery · doi:10.1016/j.jcms.2016.06.019 · Cited by 34 · see citing works
Ophthalmologic Outcomes Following Fronto-Orbital Advancement for Unicoronal Craniosynostosis
Gencarelli, J., Murphy, A., Samargandi, O. A., & Bezuhly, M. (2016) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000003085 · Cited by 33
Frontofacial Advancement by Distraction Osteogenesis: A Long-Term Review
Gwanmesia, I., Jeelani, O., Hayward, R., & Dunaway, D. (2015) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0000000000001115 · Cited by 33
The Palatal and Oral Manifestations of Muenke Syndrome (FGFR3 related craniosynostosis)
Agochukwu, N., Solomon, B., Doherty, E. S., & Muenke, M. (2012) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0b013e31824db8bb · Cited by 33 · see citing works
Memory and Response Inhibition in Young Children with Single-Suture Craniosynostosis
Toth, K., Collett, B. R., Kapp‐Simon, K. A., Cloonan, Y. K., Gaither, R., Cradock, M. M., Buono, L. A., Cunningham, M. L., Dawson, G., Starr, J. R., et al. (2008) · Child Neuropsychology · doi:10.1080/09297040701594888 · Cited by 30 · see citing works
Endoscopically assisted craniosynostosis surgery (EACS): The craniofacial team Nijmegen experience.
Delye, H., Arts, S., Borstlap, W., Blok, L., Driessen, J., Meulstee, J., Maal, T., & van Lindert, E. V. (2016) · Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery · doi:10.1016/j.jcms.2016.05.014 · Cited by 29 · see citing works
Benign Radiographic Coronal Synostosis After Sagittal Synostosis Repair
Kuang, A. A., Jenq, T., Didier, R., Moneta, L. B., Bardo, D., & Selden, N. (2013) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0b013e31828dcf24 · Cited by 29 · see citing works
Dental agenesis patterns of permanent teeth in Apert syndrome.
Stavropoulos, D., Bartzela, T., Bronkhorst, E., Mohlin, B., & Hagberg, C. (2011) · European Journal of Oral Sciences · doi:10.1111/j.1600-0722.2011.00821.x · Cited by 28
Dental Maturation in Children with the Syndrome of Crouzon and Apert
Reitsma, J. H., Balk-Leurs, I. H., Ongkosuwito, E. M., Wattel, E., & Prahl‐Andersen, B. (2013) · The Cleft Palate-Craniofacial Journal · doi:10.1597/13-071 · Cited by 28 · see citing works
Adenotonsillectomy for obstructive sleep apnea in children.
González, R. (2011) · The American Journal of Nursing · doi:10.1097/01.naj.0000403357.36435.fb · Cited by 27
Use of Ambulatory Polysomnography in Children With Syndromic Craniosynostosis
Bannink, N., Mathijssen, I., & Joosten, K. (2010) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0b013e3181ec69a5 · Cited by 27
Self-citationvan Veelen, M.-L. C., Mihajlović, D., Dammers, R., Lingsma, H., van Adrichem, L. N. A., & Mathijssen, I. M. J. (2015) · Journal of Neurosurgery: Pediatrics · doi:10.3171/2014.12.peds14260 · Cited by 27 · see citing works
Self-citationThe Management of Obstructive Sleep Apnea in Syndromic Craniosynostosis
Nash, R., Possamai, V., Manjaly, J., & Wyatt, M. (2015) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000002097 · Cited by 26
Vasco, G., Baranello, G., Ricci, D., Salerni, A., Tamburrini, G., Amante, R., Dickmann, A., di Rocco, C., Velardi, F., & Mercuri, E. (2008) · Archives of Disease in Childhood · doi:10.1136/adc.2007.128421 · Cited by 26 · see citing works
The Dental Health and Caries-Related Microflora in Children With Craniosynostosis
Mustafa, D., Lucas, V. S., Junod, P., Evans, R. D., Mason, C., & ROBERTS, G. J. (2001) · The Cleft Palate-Craniofacial Journal · doi:10.1597/1545-1569(2001)038 · Cited by 26 · see citing works
Dagi, L. R., Tiedemann, L. M., Heidary, G., Robson, C., Hall, A. M., & Zurakowski, D. (2014) · Journal of AAPOS · doi:10.1016/j.jaapos.2014.07.177 · Cited by 23
Volumetric Analysis of Cranial Vault Distraction for Cephalocranial Disproportion
Deschamps-Braly, J. C., Hettinger, P., Amm, C. E., & Denny, A. (2012) · Pediatric Neurosurgery · doi:10.1159/000337873 · Cited by 23 · see citing works
What Are the Effects of Metopic Synostosis on Visual Function?
Macintosh, C., Wells, R., Johnson, D. W., & Wall, S. (2011) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0b013e31821c6a64 · Cited by 23
Effects of a Child With a Craniofacial Anomaly on Stability of the Parental Relationship
John, D. S., Pai, L., Belfer, M., & Mulliken, J. (2003) · The Journal of craniofacial surgery (Print) · doi:10.1097/00001665-200309000-00019 · Cited by 23 · see citing works
Spruijt, B., Mathijssen, I., Bredero-Boelhouwer, H., Cherian, P., Corel, L., van Veelen, M. V., Hayward, R., Tasker, R., & Joosten, K. (2016) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0000000000002741 · Cited by 22 · see citing works
Self-citationA longitudinal study of dental arch morphology in children with the syndrome of Crouzon or Apert.
Reitsma, J., Elmi, P., Ongkosuwito, E., Buschang, P., & Prahl-Andersen, B. (2013) · European Journal of Oral Sciences · doi:10.1111/eos.12051 · Cited by 21 · see citing works
Incidence of Amblyopia and Its Risk Factors in Children with Isolated Metopic Craniosynostosis
Nguyen, T. B., Shock, L. A., Missoi, T. G., & Muzaffar, A. (2014) · The Cleft Palate-Craniofacial Journal · doi:10.1597/14-212 · Cited by 20
Differential Effects of FGFR2 Mutation in Ophthalmic Findings in Apert Syndrome
Khong, J., Anderson, P., Hammerton, M., Roscioli, T., Selva, D., & David, D. (2007) · The Journal of craniofacial surgery (Print) · doi:10.1097/01.scs.0000249358.74343.70 · Cited by 20 · see citing works
Determining the fate of cranial sutures after surgical correction of non-syndromic craniosynostosis.
Kim, S. Y., Shin, H., & Lim, S.-Y. (2017) · Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery · doi:10.1016/j.jcms.2017.08.009 · Cited by 18
Sharma, N., Greenwell, T. H., Hammerton, M., David, D., Selva, D., & Anderson, P. (2016) · Journal of AAPOS · doi:10.1016/j.jaapos.2016.04.007 · Cited by 18
Cradock, M. M., Gray, K. E., Kapp‐Simon, K. A., Collett, B. R., Buono, L. A., & Speltz, M. L. (2015) · Child s Nervous System · doi:10.1007/s00381-015-2671-0 · Cited by 17 · see citing works
Caterson, E., Shetye, P., Grayson, B., & Mccarthy, J. (2013) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e31829f4b11 · Cited by 16
Does central sleep apnea occur in children with syndromic craniosynostosis?
Driessen, C., Mathijssen, I., de Groot, M., & Joosten, K. (2012) · Respiratory Physiology & Neurobiology · doi:10.1016/j.resp.2012.03.017 · Cited by 16
Self-citationSleep apnoea in syndromic craniosynostosis occurs independent of hindbrain herniation
Driessen, C., Joosten, K., Florisson, J., Lequin, M., van Veelen, M. V., Dammers, R., Bredero-Boelhouwer, H., Tasker, R., & Mathijssen, I. (2012) · Child's Nervous System · doi:10.1007/s00381-012-1922-6 · Cited by 16 · see citing works
Self-citationFujimoto, T., Imai, K., Matsumoto, H., Sakamoto, H., & Nakano, T. (2011) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0b013e31822e5d15 · Cited by 15
Mandibular Asymmetry in Patients with the Crouzon or Apert Syndrome
Elmi, P., Reitsma, J., Buschang, P., Wolvius, E., & Ongkosuwito, E. (2015) · The Cleft Palate-Craniofacial Journal · doi:10.1597/13-143 · Cited by 14 · see citing works
Patterns of Tooth Agenesis in Patients with Crouzon or Apert Syndrome
Reitsma, J., Ongkosuwito, E., van Wijk, A., & Prahl-Andersen, B. (2014) · The Cleft Palate-Craniofacial Journal · doi:10.1597/12-180 · Cited by 13
The dental development in patients with Aperts syndrome.
Woods, E., Parekh, S., Evans, R., Moles, D., & Gill, D. (2015) · International Journal of Paediatric Dentistry · doi:10.1111/ipd.12114 · Cited by 11
Audiologic Findings in Saethre-Chotzen Syndrome
Rosen, H., Andrews, B., Meara, J. G., Stoler, J., Mulliken, J., & Rogers, G. (2011) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0b013e31820cf16a · Cited by 10 · see citing works
Papilledema in unicoronal synostosis: a rare finding.
van de Beeten, S. D. C., Cornelissen, M., van Seeters, R. M., van Veelen, M. V., Versnel, S., Loudon, S., & Mathijssen, I. (2019) · Journal of Neurosurgery: Pediatrics · doi:10.3171/2019.3.peds18624 · Cited by 9 · see citing works
Self-citationKnudsen, E., Maltese, G., Tarnow, P., Tovetjärn, R., & Kölby, L. (2012) · Journal of Plastic Surgery and Hand Surgery · doi:10.3109/2000656x.2012.676555 · Cited by 9 · see citing works
Gray, K. E., Kapp-Simon, K., Starr, J. R., Collett, B., Wallace, E. R., & Speltz, M. L. (2014) · Developmental Medicine & Child Neurology · doi:10.1111/dmcn.12643 · Cited by 8 · see citing works
Insight into the Pathophysiologic Mechanisms behind Cognitive Dysfunction in Trigonocephaly
van der Vlugt, J., van der Meulen, J., van den Braak, R. C. V. D., Vermeij-Keers, C., Horstman, E. G. C., Hovius, S., Verhulst, F., Wierdsma, A., Lequin, M., & Okkerse, J. (2017) · Plastic and Reconstructive Surgery · doi:10.1097/prs.0000000000003179 · Cited by 5 · see citing works
Family-centred care during midface advancement with a rigid external device: what do families need?
Bredero-Boelhouwer, H., Joosten, K., der Hoek, M. V. V.-V., & Mathijssen, I. (2013) · Journal of Plastic, Reconstructive & Aesthetic Surgery · doi:10.1016/j.bjps.2013.04.022 · Cited by 5
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Guideline on Treatment and Management of Craniosynostosis: Patient and Family Version
Faasse, M., Mathijssen, I. M. J., & ERN CRANIO Working Group on Craniosynostosis (2022) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000009143 · Cited by 36 · see citing works
Self-citationSagittal Craniosynostosis: Comparing Surgical Techniques Using 3D Photogrammetry
Abdel‐Alim, T., Kurniawan, M. S. I. C., Mathijssen, I. M. J., Dremmen, M. H. G., Dirven, C. M. F., Niessen, W. J., Roshchupkin, G. V., & van Veelen, M. C. (2023) · Plastic & Reconstructive Surgery · doi:10.1097/prs.0000000000010441 · Cited by 27 · see citing works
Self-citationPreclinical Application of Augmented Reality in Pediatric Craniofacial Surgery: An Accuracy Study
Ruggiero, F., Cercenelli, L., Emiliani, N., Badiali, G., Bevini, M., Zucchelli, M., Marcelli, E., & Tarsitano, A. (2023) · Journal of Clinical Medicine · doi:10.3390/jcm12072693 · Cited by 26 · see citing works
Non-syndromic craniosynostosis
Alperovich, M., Tonello, C., Mayes, L. C., & Kahle, K. T. (2025) · Nature Reviews Disease Primers · doi:10.1038/s41572-025-00607-4 · Cited by 26 · see citing works
“The development of a fused metopic suture in the first year of life without any morphological cranial deformity is referred to as metopic ridging and is distinct from trigonocephaly 13,127 .”
Elkhill, C., Liu, J., Linguraru, M. G., LeBeau, S., Khechoyan, D. Y., French, B. M., & Porras, A. R. (2023) · Computer Methods and Programs in Biomedicine · doi:10.1016/j.cmpb.2023.107689 · Cited by 23 · see citing works
Sullivan, L. E., Alving-Trinh, A. L., O’Sick, N. R., Nixon, A., Bonfield, C. M., Golinko, M. S., & Pontell, M. E. (2025) · Neurosurgical FOCUS · doi:10.3171/2024.10.focus24572 · Cited by 22 · see citing works
Raising a Child with Craniosynostosis: Psychosocial Adjustment in Caregivers
Costa, B., Edwards, W., Culshaw, L., Wilkinson-Bell, K., & Stock, N. (2022) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656221102043 · Cited by 21 · see citing works
Management of Chiari 1 Malformation and Hydrocephalus in Syndromic Craniosynostosis
Vankipuram, S., Ellenbogen, J. R., & Sinha, A. K. (2022) · Journal of Pediatric Neurosciences · doi:10.4103/jpn.jpn_49_22 · Cited by 16 · see citing works
Relating Metopic Craniosynostosis Severity to Intracranial Pressure
Blum, J. D., Beiriger, J. W., Kalmar, C. L., Avery, R. A., Lang, S., Villavisanis, D. F., Cheung, L., Cho, D., Tao, W., Whitaker, R., et al. (2022) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000008748 · Cited by 16 · see citing works
3D Analysis of the Cranial and Facial Shape in Craniosynostosis Patients: A Systematic Review
Kurniawan, M. S. I. C., Tio, P. A. E., Abdel Alim, T., Roshchupkin, G., Dirven, C. M. F., Pleumeekers, M. M., Mathijssen, I. M. J., & van Veelen, M.-L. C. (2024) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000010071 · Cited by 16 · see citing works
“Among all included publications the nasion is used as a landmark in 10 publications, sellion in 5, and subnasale in 4.”
BackgroundSelf-citationCraniosynostosis Surgery for Increased Intracranial Pressure
Still, M. E., Chidarala, S., Alvarado, A., Neal, D., Governale, L. S., & Ching, J. A. (2021) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000008357 · Cited by 15 · see citing works
“The findings presented here may be used to recommend early referral to a tertiary care center for craniofacial and neurosurgical specialty evaluation before invasive procedures, genetic testing, or potentially harmful watchful waiting in community care, thus expediting proper diagnosis and management of this condition…”
BackgroundSullivan, L. E., Li, R., Tong, V. S., Jagasia, P. M., Bonfield, C. M., Golinko, M. S., & Pontell, M. E. (2024) · Annals of Plastic Surgery · doi:10.1097/sap.0000000000004131 · Cited by 15 · see citing works
Surgical Reconstruction of Craniofacial Malformations
Carro, M. A., Donofrio, G., & Tokgöz, E. (2023) · Springer eBooks · doi:10.1007/978-3-031-31168-0_4 · Cited by 13 · see citing works
Holle, J. B., Finger, T., Lugonja, J., Schmidt, F., Schaumann, A., Gratopp, A., Thomale, U., von Bernuth, H., & Schulz, M. (2021) · Frontiers in Pediatrics · doi:10.3389/fped.2021.720074 · Cited by 12 · see citing works
“regarding the duration of PAP in craniofacial surgery are missing in the most recently published guideline (12).”
BackgroundGaillard, L., Goverde, A., van den Bosch, Q. C. C., Jehee, F. S., Brosens, E., Veenma, D. C. M., Magielsen, F. J., de Klein, A., Mathijssen, I. M. J., & van Dooren, M. F. (2021) · Frontiers in Pediatrics · doi:10.3389/fped.2021.772800 · Cited by 11 · see citing works
Self-citationLuo, A., Gurses, M. E., Geçici, N. N., Kozel, G., Lu, V. M., Komotar, R. J., & Ivan, M. E. (2024) · Child s Nervous System · doi:10.1007/s00381-024-06409-5 · Cited by 10 · see citing works
“Sagittal and metopic craniosynostosis are the first and third most common types of craniosynostosis in infants [25 – 27 ].”
BackgroundLiu, J., Chaij, J. M., Linguraru, M. G., French, B. M., Keating, R. F., Alexander, A., & Porras, A. R. (2024) · Neuroradiology · doi:10.1007/s00234-024-03393-0 · Cited by 10 · see citing works
“We also demonstrated the use of our methods to study signs of IIP in patients with NSSC, for whom reports of IIP are highly variable [8, 9, 11, 15, 22].”
BackgroundMethodInfluentialBlack Bone MRI vs. CT in temporal bone assessment in craniosynostosis: a radiation-free alternative
Valeggia, S., Dremmen, M. H. G., Mathijssen, I. M. J., Gaillard, L., Manara, R., Ceccato, R., van Hattem, M., & Gahrmann, R. (2024) · Neuroradiology · doi:10.1007/s00234-024-03525-6 · Cited by 10 · see citing works
“In young patients with craniosynostosis, who usually require multiple radiating examinations during their lifetime, this might result in additional radiation exposure, with potential radiation-induced long-term damages [1, 16–18].”
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“…suboptimal general cognition, motor function, verbal and visuospatial abilities, and autistic charac - teristics and conduct disorders (Edwards-Bailey et al., 2023; Gabrick et al., 2020 ; Mathijssen & Working Group Guideline C, 2021 ; Osborn et al., 2019 , 2021 ; van der Vlugt et al., 2012 ).”
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Genetic diagnostic yield in an 11-year cohort of craniosynostosis patients
Gaillard, L., Goverde, A., Weerts, M. J. A., de Klein, A., Mathijssen, I. M. J., & van Dooren, M. F. (2023) · European Journal of Medical Genetics · doi:10.1016/j.ejmg.2023.104843 · Cited by 7 · see citing works
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Self-citationWhat We Know About Intracranial Hypertension in Children With Syndromic Craniosynostosis
Doerga, P. N., de Goederen, R., van Veelen, M. C., Joosten, K. F. M., Tasker, R. C., & Mathijssen, I. M. J. (2023) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000009517 · Cited by 7 · see citing works
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“Outcome variables debated include magnitude and durability of head shape improvement, cost, neurodevelopmental trajectory, the burden of care to the patient, and intra- and post-operative complication rates.(8,9) Several studies have demonstrated favorable perioperative outcomes for endoscopic compared to open procedu…”
Multisuture and Syndromic Craniosynostoses
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“According to current guidelines, children with suspected CS first undergo skull radiographs in multiple projections [23].”
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ERN CRANIO patient coverage of craniosynostosis in Europe
Spivack, O. K. C., Gaillard, L., Mathijssen, I. M. J., Delye, H., Arnaud, É., Bulstrode, N., Johnson, D., Evans, M., Parks, C., Poca, M. A., et al. (2022) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-022-02475-7 · Cited by 5 · see citing works
“A more intensive genetic screening strategy helps to identify genetic mutations and determine the appropriate treatment strategy [6, 7, 11], ultimately contributing to optimised healthcare for patients with craniosynostosis.”
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“A probable explanation could be due to the fact that our OSA screening and treatment protocol by a multidisciplinary team has been appropriate enough to prevent long-term impaired growth in height [12, 27].”
BackgroundSelf-citationCraniosynostosis: Imaging and Surgical Implications
Gupta, N., Hiremath, S. B., Peters, D. A., & Miller, E. (2026) · Radiographics · doi:10.1148/rg.250081 · Cited by 4 · see citing works
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Endoscopic Techniques in Sagittal Synostosis Correction: A Systematic Review and Meta-Analysis
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Sadon, S., Brami, M., Roth, J., Zipori, A. B., Ekstein, M. P., Leshem, D., & Constantini, S. (2025) · Journal of Neurosurgery Pediatrics · doi:10.3171/2025.3.peds24651 · Cited by 3 · see citing works
Impact of SMAD6 Variants on Neurodevelopment in Craniosynostosis
Verlut, I., Guernouche, S., Rossi, M., Szathmári, A., Beuriat, P.-A., Chatron, N., Chauvel-Picard, J., Mottolèse, C., Monin, P., Vinchon, M., et al. (2025) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000011461 · Cited by 3 · see citing works
“12 Although, the genetic causes of nonsyndromic craniosynostosis are not yet well understood and not systematically investigated.”
Salvati, M., Tiberio, F., Giacon, N., Augello, A., Tamburrini, G., Pietro, L. D., Vita, A., Tosi, D. D., Perini, G., Canini, G., et al. (2025) · Regenerative Biomaterials · doi:10.1093/rb/rbaf115 · Cited by 3 · see citing works
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Health-related Quality of Life in Children and Adolescents With Sagittal Synostosis
Kurniawan, M. S. I. C., van de Beeten, S. D. C., Raat, H., Mathijssen, I. M. J., Dirven, C. M. F., & van Veelen, M. C. (2023) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000009733 · Cited by 3 · see citing works
Self-citationAssociation of gut microbiota composition and craniosynostosis
Fu, Z., Xiu, C., Cheng, X., Li, G., Wu, Y., Liu, Q., Weng, Z., Yan, Q., Wang, G., & Gu, A. (2023) · Translational Pediatrics · doi:10.21037/tp-23-76 · Cited by 3 · see citing works
The Outcomes of Endoscopic Suturectomy in Syndromic Craniosynostosis
Shim, Y., Kim, S., Ko, J. M., Jeon, S., Kim, B. J., Jung, J. H., Lee, S., Kim, K. H., Lee, J. Y., & Phi, J. H. (2023) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000009835 · Cited by 3 · see citing works
“8 Distraction osteogenesis can be operated on relatively early infants, but staged surgery is additionally required.”
BackgroundExploring Different Management Modalities of Nonsyndromic Craniosynostosis
Al-Murad, B. M., Radwan, M. A., Zaki, I. A., Soliman, M. M., Al-Shareef, E. M., Gaban, A. M., Al-Mukhlifi, Y. M., & Kefi, F. Z. (2024) · Cureus · doi:10.7759/cureus.60831 · Cited by 3 · see citing works
“Decisions are made depending on characteristics such as type, severity, and age [5].”
BackgroundInfluentialHermann, J., Raak, C. K., Ostermann, T., & Scharbrodt, W. (2025) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-025-03978-9 · Cited by 2 · see citing works
“Surgical approaches have evolved from simple linear craniectomies to more complex cranial vault reconstructions (CVR) as well as minimal invasive approaches, highlighting continued efforts to refine treatment approaches for this complex condition [1, 6].”
Gutierrez-Pineda, F., Pineda, J. P. G., & Özek, M. (2024) · Child s Nervous System · doi:10.1007/s00381-024-06572-9 · Cited by 2 · see citing works
A Preliminary Study of Hearing Loss in Children With Craniosynostosis
Min, E., Munday, J. H., Bricker, J. B., Findlen, U. M., Baylis, A. L., Asti, L., & Pearson, G. D. N. (2025) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656241312002 · Cited by 2 · see citing works
Tio, P. A. E., Koehoorn, E., Clement, L. I. F., Rizopoulos, D., Loudon, S. E., van Veelen, M. C., Spoor, J. K. H., Versnel, S. L., Pleumeekers, M. M., & Mathijssen, I. M. J. (2026) · JAMA Network Open · doi:10.1001/jamanetworkopen.2025.59871 · Cited by 2 · see citing works
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Eye and Orbital Anatomy in Metopic Synostosis
Gaillard, L., Puppels, A. E., Dremmen, M. H. G., Loudon, S. E., & Mathijssen, I. M. J. (2023) · Plastic & Reconstructive Surgery Global Open · doi:10.1097/gox.0000000000005303 · Cited by 2 · see citing works
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“Posture correction and some special types of minimally invasive surgery are best performed before 6 months, while head correction in conventional surgery generally occurs before the age of 1.5 years (23).”
BackgroundInfluentialZucchelli, M., Ruggiero, F., Babini, M., Lefosse, M., Borghi, A., Rodríguez-Flórez, N., Tarsitano, A., Nicolini, F., & Galassi, E. (2024) · Child s Nervous System · doi:10.1007/s00381-024-06520-7 · Cited by 2 · see citing works
“…oral communication during the 26th Congress of the European Association for Cranio-Maxillo-Facial Surgery held in Madrid, 27–30 September 2022. of unisutural craniosynostosis, is reported between 1/7000 and 1/15000 newborns [5], and it generally results in classic trigonocephalic phenotype [6, 7].”
Yindeedej, V., Sakamoto, H., Kunihiro, N., Umaba, R., Okuma, T., Terada, A., & Yamanaka, K. (2024) · Journal of Neurosurgery Pediatrics · doi:10.3171/2024.8.peds24287 · Cited by 2 · see citing works
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“Craniosynostosis is a condition in which one or more of the cranial sutures fuse prematurely, constraining cranial and brain development and often requiring surgical intervention [2].”
Chaij, J. M., Liu, J., French, B. M., Mirsky, D. M., Miles, R. C., Linguraru, M. G., Nguyen, P. D., Alexander, A., Görg, C., & Porras, A. R. (2025) · Plastic & Reconstructive Surgery Global Open · doi:10.1097/gox.0000000000006618 · Cited by 2 · see citing works
Faasse, M., Groot, B. C., ERN CRANIO FACE ME Project Group, Coopmans, A. G., & van de Bovenkamp, H. (2025) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000011295 · Cited by 2 · see citing works
Hidrocefalia, malformaciones craneoespinales y craneosinostosis
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Consideraciones actuales en el abordaje de la plagiocefalia posicional
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Ethical Considerations in Surgery for Single-suture Craniosynostosis
Selvaggi, G., Maltese, G., Kölby, L., Elander, A., Tarnow, P., & Kljajić, M. (2023) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000009590 · Cited by 2 · see citing works
YouTube™ as a source of parents' information for craniosynostosis
Ergüven, S. S., Topsakal, K. G., & Aksoy, M. (2023) · Orthodontics and Craniofacial Research · doi:10.1111/ocr.12732 · Cited by 4 · see citing works
The Neural Crest and Craniofacial Malformations
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Neuroimaging in the Craniosynostoses
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Spring-assisted cranioplasty for children with craniosynostosis
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Psychosocial Support for Australian Families Impacted by Craniosynostosis: A Qualitative Study
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A European Survey on Access to Mental Health Care Services Within ERN CRANIO.
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LeFort III distraction in patients with syndromic craniosynostosis: Is overcorrection beneficial?
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Virtual Surgical Planning in Craniofacial Surgery
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The ASCFS Clinical Practice Guideline for the Surgical Treatment of Craniosynostosis
Blum, J. D., O’Shea, A. W., Kalluri, M. H., Thornton, S. M., Chao, O., Vo, T., Ortmann, S. D., Mosieri, C. N., George, R. E., Garland, C. B., et al. (2026) · FACE · doi:10.1177/27325016251391603 · Cited by 1 · see citing works
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From head shape to diagnosis: Craniosynostosis for the pediatric neurologist
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The Future of Clinical Craniofacial Research: A Collaborative International Craniofacial Registry
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“Among the syndrome types, Muenke syndrome is the most common, followed by Crouzon syndrome and Pfeiffer syndrome (1).”
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Genetics of Craniosynostoses: What Is Important for the Neurosurgeon?
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“…protocols of most units do not clearly express the timing of subsequent procedures, viz., remodeling of the rest of the calvarium and midface [23–26 Early addressal, or at least not delaying addressing the rest of the calvarium in multisutural involvement (when lambdoid and other sutures are…”
Appropriateness of Computed Tomography Scanning in the Diagnosis of Craniosynostosis
Margulies, I. G., Graziano, F. D., Goel, P., Xu, H., Bui, A. H., Brown, S., Sanati-Mehrizy, P., Morgenstern, P. F., Urata, M. M., & Taub, P. J. (2021) · Journal of Craniofacial Surgery · doi:10.1097/scs.0000000000007928 · Cited by 1 · see citing works
Multidisciplinary Management of Craniofacial Malformations
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Case Report: Anisometropic Astigmatism Secondary to Unilateral Coronal Synostosis
Qayum, J. V. (2021) · Optometry and Vision Science · doi:10.1097/opx.0000000000001816
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- Authors
- Mathijssen, I. M. J.
- Affiliations
- Erasmus MC (NL)
- Corresponding author
- Mathijssen, Irene M.J.
- Venue
- Journal of Craniofacial Surgery
- Published
- 2020-11-04
- Volume
- 32
- Issue
- 1
- Pages
- 371-450
- ISSN
- 1049-2275 (ISSN-L)
- 1536-3732
- PMC
- PMC7769187
- OpenAlex
- W3096934129
- Cited by
- 140
- References
- 159
- Citations by year
- 2026: 29 · 2025: 31 · 2024: 29 · 2023: 29 · 2022: 14 · 2021: 7 · 2020: 1
- FWCI
- 7.48
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of Craniofacial Surgery (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion, other-oa)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion, other-oa)
- RePub (Erasmus University Rotterdam) (submittedVersion, other-oa)
- Funders
- Stichting Kwaliteitsgelden Medisch Specialisten
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Craniofacial Disorders and Treatments
- Health Sciences › Medicine › Surgery › Pectus Deformity Diagnosis and Treatment
- Health Sciences › Medicine › Surgery › Reconstructive Facial Surgery Techniques
- Keywords
- prenatal diagnosis, speech and language development, pediatric neurosurgery, craniofacial surgery, patient perspectives, guideline development, multidisciplinary care
- MeSH terms
- Craniosynostoses, Humans
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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