Nine de Planque

174 Chapter 10 pronounced thinning effect in the cingulate gyri in Crouzon patients is likely attributable to increased ICH. A study on regional cortical thickness and cortical surface in comparison to neurocognitive outcome would be of value. Also, it would be relevant to investigate what happens with the white matter volume of the cingulate gyrus and corpus callosum in case of ventriculomegaly. If white matter volume gets reduced by the progressive increase of ventriculomegaly by i.e. stretching of the fiber bundles or even because of cortical atrophy, which situation is reversible and what sequelae do we have to prevent? What clinical consequences does reduction of the white matter volume have on neurocognitive development? Finally, because of the low prevalence of craniosynostosis, craniosynostosis teams worldwide could profit from multicenter prospective studies to elucidate the course of the development of craniosynostosis patients. It is clear that syndromic craniosynostosis differ substantially from each other and need to be analyzed per syndrome. Such larger study groups and a study set up per syndrome can only be realized by cooperation. To compare and understand different treatment philosophies it is essential to obtain clear definitions of clinical signs and surgical indications. A structural follow-up including clinical outcomes such as skull growth and shape, signs of raised ICP and long-term emotional, behavioral, and cognitive development outcomes will contribute to improving treatment for patients with craniosynostosis. International collaborations such as the European Reference Networks can be a great facilitator in performing this research.

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