This document outlines the data quality validation processing for populating the CDM data model and defines measures that each domain follows during validation processing. Data quality validation covers several aspects including data content validation, data integrity and data profiling, with the goal of improving data content quality and integrity of the CDM data model. Research sites can use this guide locally to help improve their data prior to populating the CDM. Implementing this ahead of time causes fewer data check failures during the data curation process.
PaTH
PaTH Community Partner Outreach Template
PaTH developed a template to help researchers seeking to build engaged teams. Researchers are asked to complete the template to provide information that potential patient partners can use to evaluate whether they would like to participate in an engagement opportunity.
Tip Sheet for Researchers on Engaging Community Groups and Patient Partners
This document is intended for researchers who are considering doing community engagement, particularly those who intend to establish a longstanding relationship with a community group or patient partner. It presents tips and advice gleaned from engagement experts, researchers, and patient partners in the PaTH CRN.
Tip Sheet for Partnering with Researchers
Patient and community partnered research is becoming more common because community members have valuable insight that can help researchers develop research questions that matter the most to the community, design studies that are easier for people to participate in, and share the results of their research outside of academic journals. The tips here are meant to help you have the best possible experience partnering with researchers.
Scholars Program Processes and Procedures
The PaTH Scholars Program was established to help researchers gain the skills and confidence needed to lead and participate in multi-site “real-world evidence” studies by mentoring and engaging scholars through hands-on participation alongside experienced PaTH researchers. This resource may be adapted by others wanting to create similar programs.
Daquery
The PaTH Clinical Research Network (CRN) Department of Bio-Medical Informatics team developed Daquery a tool used to deploy code, as well as to automate and archive network-wide Quality Assurance queries. The code is publicly available and may be useful to support other CRNs data processes.
Research Findings for the Community
The PaTH Clinical Research Network (CRN) designed this template as a guide for sharing the results of a published article with the general public.
PaTH’s Story Booth: Patient and Caregiver Audio Stories
This webinar features the PaTH Clinical Research Network (CRN) and their Story Booth project. PaTH’s Story Booth project collects audio stories from patients and caregivers, helping to bring together patients who are interested in getting engaged with researchers who are looking to engage patients around specific topics. Other organizations seeking to work with PaTH or engage patients and stakeholders by collecting audio stories can use this webinar as a resource.
PaTH Protocol Review Committee (PNPRC) Toolkit
This document created by the PaTH Clinical Research Network (CRN) describes the responsibilities and structure of their PaTH Protocol Review Committee (PNPRC). Others can use this as a guide to create their own committee within their organization.
PaTH to Health Engagement Paper Highlights
The PaTH to Health Diabetes part of the PaTH Clinical Research Network (CRN) developed this paper to share the importance of engaging Patient Partners in this study.