All Research Resources

Research Proposal Intake Guidance & Examples

Published by Joanna Ball | updated on February 13, 2018

  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 has resulted in a template for evaluating studies for SPARK Research Match. (updated January 2018)   PRIDEnet The PRIDEnet Participant Advisory Committee (PAC) has developed the The PRIDE Study Ancillary Study Proposal Form to provide researchers and community partners guidance for applying to conduct Ancillary... Read more

PRIDEnet: 2017 Annual Questionnaire

Published by Jordan Capizola | updated on February 6, 2018

“2017 Annual Questionnaire” is our current, live Annual Questionnaire for The PRIDE Study. It was developed by our Research Advisory Committee (Drs. Obedin-Maliver, Lunn, Annesa Flentje, Matthew Capriotti, Micah Lubensky). It is based primarily on many published scales and pre-existing questionnaires, but also includes some novel questions created by our Research Advisory Committee. It is definitely informed by feedback from our pilot research (~18,000 enrolled participants), including types of health information collected, and research question language and composition. Read more

PRIDEnet: Sociodemographic Characteristics and Health Outcomes Among Lesbian, Gay, and Bisexual U.S. Adults Using Healthy People 2020 Leading Health Indicators

Published by Jordan Capizola | updated on February 1, 2018

"Sociodemographic Characteristics and Health Outcomes Among Lesbian, Gay, and Bisexual U.S. Adults Using Healthy People 2020 Leading Health Indicators" is a refereed journal publication written in collaboration by PRIDEnet PI, Dr. Mitchell Lunn (@mitchlunn) and others. It references  The PRIDE Study and PRIDEnet's relationship with PCORI. Published: 2017 LGBT Health,  Volume 4, Number 4 Authors: Mitchell R. Lunn, MD, MAS,1–3 Wanjun Cui, PhD, MS,4 Matthew M. Zack, MD, MPH,4 William W. Thompson, PhD,5 Michael B. Blank, PhD,6–8 and Baligh R. Yehia, MD, MPP, MSc9,10 DOI: 10.1089/lgbt.2016.0087   Read more

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