Tag Archives: data

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.

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.

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 […]

Rare Epilepsy Network (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.

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

“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).  

PCORI Methods project, “Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks”

These materials originated from the PCORI Methods project, “Privacy-Preserving Analytic and Data-Sharing Methods for Clinical and Patient-Powered Data Networks” (https://www.pcori.org/research-results/2014/privacy-preserving-analytic-and-data-sharing-methods-clinical-and-patient). One of the project aims is to “Develop freely available dissemination tools, including analytic code, educational materials, technical documentation, and user guides for these privacy-preserving analytic and data-sharing methods.” As such, the project team is sharing the materials […]