PhD defence S. (Saranda) Ombashi

Brief summary: 

In order to achieve optimal clinical care that is accessible for everyone, many treatments and surgical procedures are nowadays protocolized. However, in cleft care clinical practice still varies enormously between cleft centers on both a national and international level. The cause of these differences in treatment protocols lies in the non-uniform way that information is collected: the monitoring protocols. Patient-information and clinical information is collected by different measurement instruments (outcome measures) and at different ages, therewith impeding the possibility of comparing outcomes between centers and thus between treatment protocols. Solving this problem plays a key role in this thesis, in which we evaluate a recently established set of outcome measures in cleft care (The ICHOM Standard Set). Furthermore, the first steps to develop a Europe-wide registry for cleft lip and/or palate of the European Reference Network for Craniofacial Anomalies and ENT-disorders (ERN CRANIO) are described.