Table 1.

How Cooperative Groups Can Benefit Pediatric Palliative Care Research

PCRC support domain	Potential benefit to researchers	Example from our study
Data harmonization	Standardized datasets across studies and increased efficiency	PCRC common data elements facilitated execution of the development of our study's REDCap database
Participant registry	Documents all PCRC study participants, providing an account of overall PCRC enrollment and activity	Our study deposited data into the PCRC participant registry
Quality assurance	Improves overall research quality through assessment for data completeness and assurance that NIH requirements are met to support appropriate participant tracking	Audits reviewed participant enrollment, retention, and missing data, which helped ensure our analysis sample was appropriate to achieve study aims
Caregiver expertise	Caregiver Core offers research expertise related to caregiver-specific issues	Provided caregiver expertise to consider for articles, including secondary analyses mid-study, and journal selections for dissemination, and guidance for caregiver recruitment strategies
Measurement expertise	Expertise provided to help guide selection of measures based on sound psychometrics and established feasibility with target population	The PI consulted with the Measurement Core during study design to identify optimal measures and further enhance the electronic data collection method proposed in the study (e.g., additional strategies to decrease missing data, methods for participant reminders)
Study closeout	Support to close out the study database and prepare it to meet the PCRC data sharing requirements	Shared study database with the PCRC, allowing the PCRC to coordinate future data sharing requests and increase availability of our dataset to inform future studies

NIH, National Institutes of Health; PCRC, Palliative Care Research Cooperative group; PI, principal investigator; PPCRN, Pediatric Palliative Care Research Network.