Standardized evaluation and documentation of findings in patients with craniosynostosis

Surgical correction of craniosynostosis is usually performed according to s tandard procedures. However, a standard for clinical examination and report of findings for patients with craniosynostosis does not exist as yet. To c ompare findings from different hospitals, a documentation system was develo ped by a national craniosynostosis group. This system comprises a two-page document, clinical photographs, radiographs, CT scans, anthropometric measu rements and molecular genetic findings. Data from craniosynostosis patients collected from participating hospitals are stored in a database, which fac ilitates online access, The documentation system was developed in cooperation with the group during 3 years since 1996, It was evaluated as being practicable and reliable and enables a comparability of findings reported in different hospitals. Molec ular genetic analysis was found to support the investigation of patients wi th craniosynostosis and should therefore be integrated in the clinical eval uation. (C) 2001 European Association for Cranio-Maxillofacial Surgery.