MIDWEST CHILD PATIENT REPORTED OUTCOMES (M-cPROs) CONSORTIUM Data Management Core PROJECT SUMMARY/ABSTRACT The primary objective of the Data Management Core of the Midwest Child Patient Reported Outcomes (M- cPROs) Consortium is to support the development and maintenance of a central database, to manage data collection and storage, and to provide all biostatistical needs for the research proposed for the M-cPROs Consortium. The Data Management Core will work with the M-cPROs Consortium to support the overall goal of optimizing the measurement and clinical use of cPROs in cohorts of children with chronic disease. The Data Management Core will be led by investigators with significant expertise in biostatistics and will include experts in bioinformatics, Patient Reported Outcomes Measurement Information System (PROMIS) and PRO methodology. The Core will: 1) Provide comprehensive support for the management of data for the M-cPROs Consortium that will include refinement of a pre-existing cPRO database (a REDCap? database) to incorporate data from both scientific research projects, database security, database backup, and stringent data quality control procedures including data quality reports. 2) Provide the M-cPROs Consortium with comprehensive statistical support for all research projects to include: ongoing statistical consultation to research projects, support for experimental design, sample size, the suitability and validity of models to be used, such as longitudinal analyses, power considerations, interpretation of statistical results, and preparation and analyses of data for presentations and manuscripts. 3) Develop a common data portal for the broader Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium and to provide coordination and oversight for the PEPR consortium-wide data management activities that will arise from the common data portal.
| Flynn, Kathryn E; Kliems, Harald; Saoji, Nikita et al. (2018) Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness. Health Qual Life Outcomes 16:203 |
