Creation and implementation of a prospective pediatric clinical outcomes registry. J Registry Manag 2011;38(3):138-43
Date
01/10/2012Pubmed ID
22223056Scopus ID
2-s2.0-84863243093 (requires institutional sign-in at Scopus site) 5 CitationsAbstract
OBJECTIVE: To build a pediatric clinical outcomes registry (COR) using a contemporary information system designed to support research and outcome studies and to improve patient care and quality of life.
PATIENTS AND METHODS: In response to physician needs, this process was implemented: 1) database needs assessment survey, 2) evaluate existing systems and vendors, 3) pilot test a COR tool, and 4) build a COR. The COR was designed to include patients with the following conditions: scoliosis, neonatal surgery, urologic surgery, cleft palate, pain management, otitis media, and voice and airway problems. Agency for Healthcare Research and Quality methodology was followed to create the infrastructure and registry.
RESULTS: The database needs assessment survey was completed by 99 individuals and most respondents wanted to collect more standardized data than currently available in existing systems. Satisfaction with the existing systems was rated low. The COR was created and a pilot test was successful. The COR was implemented and has been functioning for more than 2 years.
CONCLUSIONS: By identifying physicians needs, evaluating existing technology and incorporating a multidisciplinary team, the COR was created and implemented to maintain clinical data on a variety of patient diagnoses and outcomes using a single technology platform that enhances potential research collaborations and minimizes redundant data entry and data collection, such as quality of life assessments for the patients.
Author List
Cassidy LD, Jensen JN, Durkee CT, Calkins CM, Sato T, Tassone C, Kerschner J, Theilke RJ, Mitchell ME, Hoffman GM, Oldham KTAuthors
Casey Matthew Calkins MD Professor in the Surgery department at Medical College of WisconsinLaura Cassidy PhD Associate Dean, Director, Professor in the Institute for Health and Humanity department at Medical College of Wisconsin
George M. Hoffman MD Chief, Professor in the Anesthesiology department at Medical College of Wisconsin
MESH terms used to index this publication - Major topics in bold
Clinical Trials as TopicHumans
Information Storage and Retrieval
Information Systems
Pediatrics
Prospective Studies
Registries
