A multi-center project titled: """"""""Registry of Craniofacial Treatment Outcomes,"""""""" (PI Betty Jane Philips) has been funded by NIDR for the period 01/01/98 through 12/31/02. UCSF Center for Craniofacial Anomalies is one of the ten centers to serve as test sites for the measures as they are developed by the Clinical Outcomes Research Council (COR Council). Dr. Karin Vargervik, Director of the UCSF Center for Craniofacial Anomalies is a member of the COR Council and is one of three members to develop the alveolar bone graft surgery and orthodontic outcomes measures. All measures developed by the COR will be tested in the participating centers and modified as necessary before distribution to all interested Cleft Palate and Craniofacial Centers.
The aims of the overall project are: 1) development of Craniofacial Registry for collection of clinical outcome data, 2) development of researched clinical outcome data, 2) development of researched clinical outcome measures, 3) introduction of researched measures for widespread (national) collection of data, 4) promotion of internal (self) assessment, by craniofacial teams, based on comparison of their performance with aggregate data, 5) assessment of changes in aggregate data as teams take actions to improve outcomes. Procedures include: 1) design of multiple outcome measures, 2) clinical evaluation of outcome measures, 3) widespread data collection using the researched outcome measures, 4) transfer of the data on clinical outcomes to a Craniofacial Registry, 5) analysis and reporting of aggregate, 6) comparative analysis of outcome performances of interdisciplinary craniofacial teams, 7) report to the Registry of actions taken to improve clinical outcomes, 8) continued collection and transfer of data, 9) assessment of changes in data over time. An environment for the continuing evaluation of craniofacial healthcare outcomes will be created by the development of this Registry and the use of reliable, validated research outcome measures. The UCSF Center for Craniofacial Anomalies is also developing a shared data base for craniofacial anomalies with the Craniofacial Center at Stanford University. It is expected that by being able to pool data and share information we will learn more about effects of treatment in various types of craniofacial birth defects. Ongoing interactions already exist between the clinical and basic scientists to further knowledge, health and potentially prevention.
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