Standardized evaluation and documentation of findings in patients with craniosynostosis

J Craniomaxillofac Surg. 2001 Feb;29(1):25-32. doi: 10.1054/jcms.2000.0157.

Abstract

Surgical correction of craniosynostosis is usually performed according to standard procedures. However, a standard for clinical examination and report of findings for patients with craniosynostosis does not exist as yet. To compare findings from different hospitals, a documentation system was developed by a national craniosynostosis group. This system comprises a two-page document, clinical photographs, radiographs, CT scans, anthropometric measurements and molecular genetic findings. Data from craniosynostosis patients collected from participating hospitals are stored in a database, which facilitates 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. Molecular genetic analysis was found to support the investigation of patients with craniosynostosis and should therefore be integrated in the clinical evaluation.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Anthropometry
  • Cephalometry
  • Craniosynostoses / diagnosis*
  • Databases as Topic
  • Diagnostic Imaging
  • Feasibility Studies
  • Forms and Records Control
  • Humans
  • Medical Records / standards*
  • Medical Records Systems, Computerized
  • Molecular Biology
  • Online Systems
  • Photography
  • Physical Examination
  • Tomography, X-Ray Computed