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Duke’s CleftKit Project – Prospective Data Collection for the Comprehensive Appraisal of Cleft Care

Thursday, March 16, 2017
By Hillary Jones, American Cleft Palate-Craniofacial Association
Duke CleftKit Team

In January, Duke launched its CleftKit project — a prospective data-collection system for cleft research and quality improvement. The project is led by pediatric plastic surgeon Alexander C. Allori, MD, MPH, a former member of the ACPA Data Standard Committee. CleftKit is built on the foundation of the Standard Set of Outcome Measures for Cleft Lip/Palate (CL/P) that was developed by an international and multidisciplinary working group under the auspices of the International Consortium of Health Outcome Measures (ICHOM). 

The Standard Set was inspired by and modeled after the pioneering work of many clinicians and researchers who have contributed to the body of cleft outcome studies. The Standard Set includes key outcome measures for speech, hearing, breathing, eating/drinking, oral health, appearance, and psychosocial well-being. Wherever possible, patient-reported and/or family-reported outcome measures were chosen to complement clinician-reported measures. The Standard Set was designed to be a “basic minimum of meaningful metrics" that all cleft teams could (and should) collect; moreover, the Standard Set was also designed to be extensible, such that teams could add other outcome measures of interest, if they wanted. 

Duke’s CleftKit is an extension of the Standard Set that adds more psychosocial and appearance-related measures, as well as team-based process metrics. Presently, the Duke team collects outcomes data on all patients with CL/P as standard practice, using a REDCap database that is integrated into their clinical workflow. Duke has established collaborations with several other centers in North America and Europe that are already collecting Standard Set data and hopes to get other teams interested in adopting the Standard Set.

Dr. Allori will discuss this work at ACPA's 74th Annual Meeting on Friday, March 17, at 10:30 in Concurrent Session 3: Dissemination and Implementation of a Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care. Session attendees will learn more about standardized outcomes collection and will hear from three teams, including Duke, that have successfully implemented the Standard Set. They will describe their overall strategies and the obstacles that they had to overcome. Representatives from ICHOM will also be available so you can discuss if the Standard Set might be a good fit for your team and how you might get started. The session will also include John Meara, Ross Long, Jr., Kathy Chapman, Carolyn Rogers-Vizena, Jason Arora, and Maarten Koudstaal.