This document provides an overview of how and why the ABOUT Network and 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.
This document is the final report 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 structured clinical data from patient […]
Tom Carton (REACHnet PI), discusses the process REACHnet used to convene a multi-stakeholder group to identify research priorities among health system leaders in this January 2016 presentation given at the National Academy of Medicine-PCORI meeting, Accelerating Clinical Knowledge Generation and Use. This work was funded by PCORI Health Systems Demonstration Project: Phase 1.
NephCure Kidney Network developed a research request form using similar forms on the Commons as a guide After initial drafting, this form went through several rounds of feedback from their Research Committee and other stakeholder groups. This form can be used to request data or other types of collaboration from NKN or can be used […]
This webinar is a how-to guide for patients to use Facing Our Risk of Cancer Empowered (FORCE) hereditary cancer research study search tool. The tool matches patients with an inherited mutation to prevention, detection, quality of life and other research studies enrolling patients like them. This is a direct-to-consumer research matching strategy.
Interactive Autism Network (IAN) IAN provides research matching services where external researchers can apply to access the IAN cohort. Research projects must meet specific requirements to be eligible but does not have a formal proposal review/evaluation process. However, IAN also works with the Simons Foundation Powering Autism Research for Knowledge (SPARK) to develop and implement similar processes. This work […]
“Assessing Sexual Orientation and Gender Identity for Research” was developed by co-directors Dr. Juno Obedin-Maliver and Dr. Mitchell Lunn, based on clinical and research expertise, and was informed by participant data in our pilot research (~18,000 enrolled participants).
“The PRIDE Study Ancillary Study Proposal Form” is the update version of our Topic Specific Study application for researchers to complete. It was developed by our Research Advisory Committee, based on clinical and research expertise, with input from our Participant Advisory Committee.
This paired spreadsheet and instruction set provides a template and explanation of how to create a graphic representation of recruitment of participants over time. This tool can be used to understand recruitment or “accrual”, as the tool refers to it, in reports or develop ones of your own. Instructions: Accrual graph instructions- generic for sharing […]
This resource contains the PCORnet Obesity Demo Projects [Antibiotics Study (ABX) and the PCORnet Bariatric Study (PBS)] evaluation survey questions from interim evaluation cycles 1-5. The evaluation activities for the Obesity Demo Projects focused on assessment of overall network functionality and PCORnet infrastructure support of large-scale observational research. Study-specific language has been removed and the […]