The table below contains an evolving compilation of study management resources and tools from across PCORnet. Checklists, Policies, & Other Guidance SCILHS: Publications and Presentations Policy and Procedures ADVANCE: Research Glossary GRIPP2 Reporting Checklists: Tools to Improve Reporting of Patient and Public Involvement in Research REACHnet: An overview and implications for clinical research Rare Diseases […]
Purpose Statement (as written by the authors): This document provides a comprehensive guide for consideration at the start of PCORnet studies for use by investigators and PCORnet leadership. It is intended to serve as a tool to stimulate discussion and provide guidance for planning and decision-making during PCORnet study development. Published: April 27, 2018 Authors: […]
The Informatics team at UNC Chapel Hill’s CTSA used an electronic workflow to recruit participants to the ADAPTABLE study. Tools used were the Epic EHR (particularly the patient portal, MyChart) and REDCap. These materials will help other institutions wishing to recruit study participants via Epic MyChart and/or bulk email from REDCap. You can download the documentation […]
This Best Practice Sharing Session discusses the process the Research Innovations Workgroup used to identify innovation needs in the network, detailed their use of the Commons to facilitate cross-network collaboration, and showcased the resulting products. Five areas of interested surfaced and the workgroup leveraged the PCORnet Commons as a collaboration platform – encouraging networks to […]
The Phelan-McDermid Syndrome Data Network (PMS-DN) Enrollment Drive Protocol outlines the three goals of the network’s participant enrollment project and the protocols they used to achieve those goals.
PARTNERS uses this form to evaluate the potential research study collaborations. After a potential collaborator fills out the form, the PARTNERS research committee reviews it, asks further clarifying questions, and makes the final decision regarding eligibility to proceed.
PARTNERS aims to improve the lives of children with rheumatic diseases through research that matters to patients and families. To achieve this aim, PARTNERS has developed this document which outlines the norms and expectations guiding their data sharing process. The document also details who is eligible to work with PARTNERS and the expectations of researchers.
The Resilience Against Depression Disparities (RADD) study offers Resources for Services training to partnered agency staff and hopes to determine if there is an added benefit to offering Resiliency Classes (RC) to study participants receiving services at those agencies. The RC are 7 sessions of CBT taught by a non-licensed instructor to participants with low […]
This slide deck provides an overview of how and why the ABOUT Network and Facing Our Risk of Cancer Empowered (FORCE) developed the Hereditary Breast and Ovarian Cancer (HBOC) Research Study Search Tool for helping match HBOC patients to prevention, detection, treatment and quality of life studies.
The resources below include a final report and a concluding presentation from the PPRN EHR extraction pilot project whose objective was to evaluate the effectiveness and value of empowering individual participants to play an active role in making their own clinical data available for research through the use of a mobile app capable of downloading […]