Tag Archives: data

Best Practice Sharing Session: Clinic Staff as a Unique Stakeholder Group in Patient-Centered Outcomes Research

Research Action for Health Network (REACHnet) and LPHI discuss the role of clinic staff in patient-centered outcomes research. Through a project funded by the PCORI Eugene Washington Engagement Award, LPHI implemented pragmatic research studies that resulted in a training workbook to help clinic staff better understand the research process and eliminate implicit bias. Speaker: Daniele […]

PCORnet CMS Data Linkage Team: Pilot Linkage Project Process and Results

PCORnet’s CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims data to supplement PCORnet data in pragmatic clinical trials such as the ADAPTABLE study, which compares the effectiveness of different […]

PaTH: Retaining Local Perspectives in the Era of the Central IRB – The PaTH Network Protocol Review Committee Poster

As currently implemented, the single IRB process means valuable input from both institutional as well as patient and community resources of ceding sites is lost. The PaTH Network aims to develop and implement a process to ensure local patient input in research protocols reviewed under the single, or central, IRB model. Published: November 7, 2018 […]

PaTH: A Multi-Site Review Process that Retains Local Patient Involvement in the Era of the Central IRB Abstract

The PaTH CDRN has developed a pre-IRB review process that incorporates input from all involved sites and their patient partners, enabling all stakeholders to help craft final research plans. Patient partners included in such a pre-IRB review often identify issues that are distinct from those raised by IRB members or by patients who work with […]

PORTAL and OneFlorida: ‘Safety of Direct Acting Antivirals for Patients with Hepatitis C Virus’ Research Request Form

The ‘Safety of Direct Acting Antivirals (DAA) for Patients with Hepatitis C Virus (HCV)’ project examined whether patients with HCV who are prescribed newer DAA medications experienced higher rates of adverse events than patients with HCV who are untreated. Published: November 6, 2018 Author: Donna Woo

PORTAL and OneFlorida: ‘Safety of Direct Acting Antivirals for Patients with Hepatitis C Virus’ Adverse Events Definitions

The ‘Safety of Direct Acting Antivirals (DAA) for Patients with Hepatitis C Virus (HCV)’ project examined whether patients with HCV who are prescribed newer DAA medications experienced higher rates of adverse events than patients with HCV who are untreated. The project team is sharing the list of the adverse events and definitions (e.g., ICD-9 and […]

PCORnet Data Sharing Materials

The table below contains an evolving compilation of data sharing resources and tools from across PCORnet. Analytic Plans and Other Resources Obesity Antibiotics Study: Analytic Plan PCORnet Bariatric Study: Analytic Plan PEDSnet: Data Resources Data Coding, Privacy, and Safety Obesity Antibiotics Study: Data Safety Documentation PCORnet Cross-Network Code Repository Protecting Privacy in the PCORnet Distributed […]

PCORnet: EHR Pilot Project Final Report and Presentation

The resources below include a final report and a concluding presentation 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 […]

REN: Online Data Dashboard

The Rare Epilepsy Network (REN) has developed a website exclusively for visualization of their baseline data. This website shows a number of different visual representations of their data. These visual representations can be changed by clicking on different variables. This tool can be used to better understand the REN study population. Published: March 21, 2018