All Research Resources

Obesity Antibiotics Study: Stakeholder Engagement in Studies Toolkit

Published by Joanna Ball | updated on May 24, 2018

This collection of stakeholder engagement tools was developed with the Executive Antibiotics Stakeholder Advisory Group (EASAG) for the PCORnet Obesity Antibiotics Study (ABX Study).  The toolkit includes an engagement checklist, Memorandum of Understanding (MOU) template, and stakeholder feedback survey. Comprehensive Toolkit Stakeholder Engagement Checklist Memorandum of Understanding Stakeholder Feedback Survey Author(s): ABX Study Dissemination Workgroup and Genetic Alliance Published: April 30, 2018 Read more

Best Practice Sharing Session: LGBTQ Adaptation of Cognitive Behavioral Therapy (CBT)

Published by Joanna Ball | updated on May 23, 2018

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 mood. These were developed by Dr. Jeanne Miranda and adapted for the LGBTQ community through input from community partners and the LGBTQI2-S UsCC (Underserved Cultural Communities) Subcommittee. This subcommittee belongs to the County of Los Angeles – Department of Mental Health (DMH) Program Support Bureau... Read more

ABOUT Network: Hereditary Breast and Ovarian Cancer (HBOC) Research Study Search Tool webinar

Published by Sue Friedman | updated on May 16, 2018

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.   Read more

Mid-South CDRN: Trial Accrual Tool and Instructions

Published by Jordan Capizola | updated on March 30, 2018

The purpose of this tool is to be able to create targets and track accruals of human participants for clinical trials over a specified period of time. You may use this resource for your own research projects; instructions for use are posted below and are also embedded in the template. Accrual graph instructions (.doc) Trial Accrual Tool Template (.xls) Read more

NephCure Kidney Network (NKN): Research Request Form

Published by Adrianna Evans | updated on March 27, 2018

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 to guide the development of your own research request form. Read more

Best Practice Sharing Session: Lessons Learned in ADAPTABLE

Published by Adrianna Evans | updated on March 27, 2018

This Best Practice Sharing Session originally aired on March 7, 2018. This presentation served to provide information about starting up the ADAPTABLE trial. Lessons learned on recruitment and retention are shared. Speakers: Holly Robertson, PhD, Duke Schuyler Jones, MD, Duke [video width="320" height="240" mp4="https://pcornetcommons.org/wp-content/uploads/2018/03/2018-03-07-PCORnet-BPSS_Recording-2.mp4"][/video] 2018-03-07 PCORnet BPSS_Slides Read more

FORCE HBOC Research Study Search Tool Webinar

Published by Sue Friedman | updated on March 27, 2018

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. Read more

Research Proposal Intake Guidance & Examples

Published by Joanna Ball | updated on March 27, 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 Studies.... 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