PEDSnet Stakeholder-Informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools


Study Dates

2024

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PEDSnet

Abstract

Part of a PEDSnet’s Phase 3 Infrastructure Grant from PCORI to meaningfully engage patients and families in research and research decision-making, and use stakeholder-informed priorities as a framework for future PEDSnet project funding decisions.

Affiliation(s)

Children's Hospital of Philadelphia

Funder(s)

This research was made possible through the generous support of Patient-Centered Outcomes Research Institute. The statements presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of PCORI, its Board of Governors, or its Methodology Committee.

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Description

The PEDSnet Stakeholder-informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools is part of PEDSnet’s Phase 3 Infrastructure Grant from PCORI. A key goal of Phase 3 of PEDSnet is to meaningfully engage patients and families in research and research decision-making, and use stakeholder-informed priorities as a framework for future PEDSnet project funding decisions. This set of studies aims to develop a prioritized list of research projects that will generate new evidence that can have an immediate impact on patient health outcomes.
Each study will focus on one of three priority areas:

  • Intellectual and Developmental Disabilities (IDD),
  • Pulmonology,
  • Nephrology.

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Related Study

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PEDSnet-DBPNet Stakeholder-informed Patient-Centered Research Prioritization for Patients with Intellectual & Development Disabilities (IDD)
Affiliation:Children's Hospital of Philadelphia; Cincinnati Children's Hospital Medical Center; Children's Mercy Kansas City; Montefiore Children's Hospital; Nationwide Children's Hospital
Part of a PEDSnet Infrastructure Grant to meaningfully engage patients and families in research and research decision-making, and use stakeholder-informed priorities as a framework for future PEDSnet project funding decisions. This project aimed to develop a prioritized list of research projects to generate new evidence that can have immediate impact on patient health outcomes. The project area of focus is intellectual and developmental disabilities (IDD). This area of focus was selected because it is one of two legislatively mandated PCORI priorities. The IDD prioritization is conducted as a collaboration between PEDSnet and the Developmental-Behavioral Pediatrics Research Network (DBPNet).
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PEDSnet Infrastructure
Affiliation:Children's Hospital of Philadelphia
The infrastructure project secures funding to ensure the continuation of PEDSnet centralized data management services, where data from contributing institutions is managed, transformed, undergoes data quality protocols, and is made openly accessible and disseminated to researchers and stakeholders. PEDSnet is a PCORnet Clinical Research Network (CRN) focused exclusively on improving child health through patient-centered outcomes research. PEDSnet produces reusable and novel governance, informatics, scientific and training resources. The infrastructure project secures funding to ensure the continuation of PEDSnet centralized data management services, where data from contributing institutions is managed, transformed, undergoes data quality protocols, and is made openly accessible and disseminated to researchers and stakeholders.

Creative Commons license

a CC-BY 4.0 Attribution license.
Except where otherwised noted, this item's license is described as a CC-BY 4.0 Attribution license.

Cite this Study

Forrest, C. PEDSnet Stakeholder-Informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools. [Study]. PEDSpace Knowledge Bank. https://hdl.handle.net/20.500.14642/851

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