Core Leadership: Data Manager:
Kathryn Colborn, PhD Alexandra Tillman
The PCRC Data Informatics and Statistics Core (DISC) focuses on offering the following primary resources to PCRC members: 1) statistical consultations for grant applications, 2) database development for PCRC-supported studies, 3) Core Data Elements, and 3) a repository of palliative-care research data.
The DISC currently has three biostatisticians available to consult on PCRC-supported grant applications. The team has expertise in methods for handling missing data, correlated data (i.e., data from multiple sites and/or longitudinal data), clinical trial design, sample size estimates, and statistical methods for analyzing large observational data sets. PCRC investigators are entitled to three free hours of consulting on their PCRC-supported grant applications and/or funded research.
Please contact Kathryn Colborn for questions related to statistical consulting.
Core Data Elements:
The PCRC offers guidelines to investigators on Core Data Elements (CDEs) that should be collected in any palliative-care research study. These CDEs allow us to provide key information on the PCRC study population and data available in the data repository. More information on CDEs can be found here.
Please contact Alexandra Tillman for questions related to Core Data Elements.
The DISC data manager is available to consult or develop databases for PCRC-supported research studies. The primary data storage system DISC recommends using in single or multi-site studies is REDCap.
Please contact Alexandra Tillman for questions related to Database Development.
The PCRC DISC hosts a data repository of PCRC-supported and non-PCRC palliative care research study data. These data and related study materials can be accessed by requesting approval from the PCRC secondary data analysis committee. More details on the repository can be found here.
Please contact Alexandra Tillman for questions related to the data repository.