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Data

The innovative resources and tools found here can help you improve the quantity and quality of data used for your studies. PCORnet believes data networks should follow the principles of efficiency, interoperability, transparency, reproducibility, security, and inclusivity of stakeholders. Access pioneering data tools and models now!

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Research

Find innovations that can be applied across the research life cycle - from generating research questions, identifying patients and capturing data, to disseminating results back to participants and the public. Explore these tools and move your research forward!

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Resources

Check out these resources to tap into the wealth of experience and expertise available through PCORnet – or share your own innovative research resources. Search and share now!

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PaTH Network Protocol Review Committee (PNPRC)

The PaTH Network Protocol Review Committee (PNPRC) meets to provide an inclusive pre-IRB review of all multi-site network studies going through a central IRB process. Composed of one patient or community partner and one IRB-affiliated member from each participating site, the PNPRC review ensures each of many diverse communities and institutions have input on the research in which they participate. Outline of the process: Study team notifies PNPRC when materials will be ready for review A PNPRC meeting is scheduled for at least 1 week after receipt of study materials Approximately 1 week after the PNPRC meeting, a summary document...

LikeJoanna Ball Added September 6, 2018

PaTH: Survey to Assess Engagement

This engagement survey was distributed to PaTH clinicians, patient partner, and staff.  Results were compiled and distributed to all original recipients. The stakeholder work group reviewed the findings and made recommendations to the PaTH Steering Committee. The PaTH network has also provided the Data Dictionary for the survey for your convenience.

LikeJoanna Ball Added September 6, 2018

Decoding the PaTH of EHR data: How it’s collected, how it’s protected via a chocolate making analogy

This whiteboard video and accompanying visual guide explains how electronic health record (EHR) data is captured, protected, and utilized for research purposes via the PaTH network. This process is illustrated through a chocolate-making analogy, given the PaTH to Health: Diabetes study’s main investigative site is in Hershey, PA.  

LikeJoanna Ball Added September 6, 2018

Best Practice Sharing Session: Sourcing, cataloguing, and disseminating research innovations across PCORnet

This Best Practice Sharing Session discusses the process the Research Innovations Workgroup used to identify innovation needs in the network, detailed their use of the Commons to facilitate cross-network collaboration, and showcased the resulting products. Five areas of interested surfaced and the workgroup leveraged the PCORnet Commons as a collaboration platform – encouraging networks to upload information on tool development and implementation. Uploads and traffic were tracked and the workgroup decided to curate two guidance documents – one on direct-to-consumer recruitment and one on dissemination of results. The guidance documents were released and serve the dual purpose of disseminating current...

LikeJoanna Ball Added September 6, 2018

pSCANNER: Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics

In this Journal of the American Medical Informatics Association article from pSCANNER, the research team describes how they explored patient/caregiver experiences with a high-tech online engagement approach for patient-centered research prioritization, compared their experiences with those of professional stakeholders, and identified factors associated with favorable participant experiences. The team conducted 8 online modified-Delphi (OMD) panels that included two rating rounds with a statistical feedback/online discussion round in between. The Panels focused on weight management/obesity, heart failure, and Kawasaki disease. Citation:  Dmitry Khodyakov, Sean Grant, Daniella Meeker, Marika Booth, Nathaly Pacheco-Santivanez, Katherine K Kim; Comparative analysis of stakeholder experiences with an online approach...

LikeJoanna Ball Added September 6, 2018

PMS-DN: Registry Insight Monthly Newsletter Sample

This is a sample of the April 2018 Registry Insight newsletter from the Phelan-McDermid Syndrome Data Network (PMS-DN) The Phelan-McDermid Syndrome Foundation (PMSF) creates and disseminates a monthly newsletter to members. One article in the newsletter is a piece called the Registry Insight which highlights exciting updates related to the network's registry.

LikeJoanna Ball Added September 6, 2018

PMS-DN: Enrollment Drive Protocol

The Phelan-McDermid Syndrome Data Network (PMS-DN) Enrollment Drive Protocol outlines the three goals of the network's participant enrollment project and the protocols they used to achieve those goals.  

LikeJoanna Ball Added September 6, 2018

PMS-DN: Parent Action Committee Charter

This charter was developed in partnership by the Phelan-McDermid Syndrome Foundation and their Parent Action Committee (PAC). The charter lays out the roles and responsibilities for members of the committee and the time commitment we expected for patient-centered governance. Use this as guidance when developing a committee charter in your community.

LikeJoanna Ball Added September 6, 2018

PCORnet Multi-stakeholder Engagement Special Supplement

The PCORnet Multi-stakeholder Engagement Special Issue to Medical Care has been published online and was developed in collaboration with leadership from the PCORnet Phase I Patient and Consumer Engagement Task Force. The goal was to highlight PCORnet Phase I patient and multi-stakeholder engagement across the PCORnet partner networks. Manuscripts cover topics such as: novel engagement approaches and methods network recruitment and retention policy development informed consent research topic prioritization PCORnet partner networks who contributed to this Special Issue include:  ADVANCE AR-PoWER (ArthritisPower) CCFA Partners Greater Plains Collaborative Health eHeart and the ADAPTABLE Team Mid-South CDRN MoodNetwork NYC-CDRN pSCANNER REACHnet A special thanks also to Sarah Daugherty (Senior Program Officer, PCORI), Jaye Bea Smalley (former Engagement Officer at PCORI), Mark Helfand (OHSU), Kathy Kim (pSCANNER) and Consuelo Wilkins (Mid-South)...

LikeJoanna Ball Added September 18, 2018

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PARTNERS: Research Collaboration Evaluation Form

PARTNERS uses this form to evaluate the potential research study collaborations. After a potential collaborator fills out the form, the PARTNERS research committee reviews it, asks further clarifying questions, and makes the final decision regarding eligibility to proceed.

LikeJoanna Ball Added September 6, 2018


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