Creation and implementation of a prospective pediatric clinical outcomes registry.
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.


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.
Medical College of Wisconsin, Milwaukee, WI, USA. Lcassidy@chw.org
Laura D
LD
Cassidy
John N
JN
Jensen
Charles T
CT
Durkee
Casey M
CM
Calkins
Thomas
T
Sato
Channing
C
Tassone
Joseph
J
Kerschner
Robert J
RJ
Theilke
Michael E
ME
Mitchell
George M
GM
Hoffman
Keith T
KT
Oldham
D002986:Clinical Trials as Topic / Q000706:statistics & numerical data*; D006801:Humans; D016247:Information Storage and Retrieval / Q000379:methods; D007256:Information Systems / Q000458:organization & administration* / Q000706:statistics & numerical data*; D010372:Pediatrics; D011446:Prospective Studies; D012042:Registries / Q000706:statistics & numerical data*