All Research Resources

PRIDEnet: Assessing Sexual Orientation and Gender Identity for Research

Published by Jordan Capizola | updated on February 6, 2018

“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). Read more

PRIDEnet: The PRIDE Study Ancillary Study Proposal Form

Published by Jordan Capizola | updated on February 6, 2018

“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.   Read more

PRIDEnet: The PRIDE Study Participant Advisory Committee PAC By-laws

Published by Jordan Capizola | updated on February 6, 2018

“The PRIDE Study Participant Advisory Committee PAC By-laws” is the description of self-governance by our Participant Advisory Committee. It was developed entirely by the Participant Advisory Committee (comprised of community members).   Read more

PRIDEnet: PCORnet Recommendations for SOGI Data Elements in CDM v3.1

Published by Jordan Capizola | updated on February 6, 2018

"PCORnet Recommendations for SOGI Data Elements in CDM v3.1” was written by co-directors Dr. Mitchell Lunn and Dr. Juno Obedin-Maliver. It is based on research literature, our co-directors’ clinical and research expertise, and definitely informed by participant data in our pilot research (~18,000 enrolled participants).   Read more

Mid-South CDRN: Clinical Trials Recruitment Graphic Tool

Published by Adrianna Evans | updated on February 5, 2018

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 Spreadsheet: Template Trial Accrual Tool Template testing. Read more

PCORnet Obesity Demo Projects: Cycles 1-5 Evaluation Survey Questions

Published by Joanna Ball | updated on January 3, 2018

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 format standardized in an effort to allow you to adapt the surveys for your use. Developed by: Brie Purcell & John Holmes Last updated: November 2017 Read more

SMART IRB Toolkit V1

Published by Joanna Ball | updated on December 19, 2017

This SMART IRB toolkit provides templates, guides, and best practices for institutions that would like to join SMART IRB or use it for a study. The toolkit chronologically outlines the necessary pieces around joining and using SMART IRB and provides support for both reviewing IRBs and relying institutions. Please reach out to Tamara Wurst (@tamara-wurst) if you have any questions or feedback for the toolkit. Curated by: Tamara Wurst and Amy Franklin Last Updated: November 13, 2017 Read more

Best Practice Sharing Session: PCORnet Commons Tools for Electronic Consent Workgroup Webinar Series: Part 2

Published by Adrianna Evans | updated on January 10, 2018

This presentation, originally recorded on, November 13, 2017, looked at e-consent from several different perspectives. The presentation discussed different technologies used to obtain consent in different contexts. It details different guidelines as well as use of layered consent. Speakers: Dr. Holly Peay, RTI Dr. Erin Rothwell, University of Utah David Borasky, WIRB-Copernicus Group   [video width="1024" height="768" mp4="https://pcornetcommons.org/wp-content/uploads/2017/11/2017-11-13-PCORnet-BPSS_Recording.mp4"][/video]   Read more

Strategies for Effective Dissemination

Published by Joanna Ball | updated on November 13, 2017

      Read more

Best Practice Sharing Session: PROMIS and It’s Place in PCORnet

Published by Jordan Capizola | updated on November 1, 2017

This presentation gave an overview of how PROMIS can provide reliable, flexible, and responsible treatment options to patients across multiple health domains. Speaker: Dr. David Cella, CAPriCORN PCORI Office Hours seminar_1-12-15_cella Presented on January 15, 2015 Read more