PEDSnet-DBPNet Stakeholder-informed Patient-Centered Research Prioritization for Patients with Intellectual & Development Disabilities (IDD)


Study Dates

2023-12 - Present

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PEDSnet

Abstract

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).

Affiliation(s)

Children's Hospital of Philadelphia
Cincinnati Children's Hospital Medical Center
Children's Mercy Kansas City
Montefiore Children's Hospital
Nationwide Children's Hospital

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

This study, one of a three part PCORI Infrastructure Grant, aims to describe a multi-step process for identifying stakeholder-informed research priorities with the potential to generate new evidence that can have an immediate impact on patient health outcomes. The process involves 5 steps:

  1. Defining the questions that will elicit research priority areas and recruitment of stakeholders;
  2. Topic Elicitation;
  3. Topic Curation;
  4. Clinician Scientist Group ranking of topics; and
  5. Parent/Youth Group ranking of topics.

Study Aims

  1. Generate a list of stakeholder-informed research priorities with the potential to generate new evidence related to IDD that would have immediate impact on patient health outcomes.
  2. Demonstrate the feasibility of a multistep process for identifying stakeholder informed research priorities that could be used by PEDSnet to identify stakeholder informed research priorities related to PCORI Strategic Priorities for pediatric health research and/or priorities determined by the PEDSnet Steering Committee.

Study Design

This study entails prospective recruitment of youth, parents/caregivers, clinicians, and clinician-researchers to produce stakeholder-informed research priorities. The study team uses crowdsourcing methods to collect responses to study questions from participating youth, parents/caregivers, and clinicians.

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Related Study

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PEDSnet Stakeholder-Informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools
Affiliation:Children's Hospital of Philadelphia
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.

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

Blum, N., Wiley, S., Nadler, C., Muniz, E., Forrest, C., Sood, E., Bartlett, C., & Mendonca, E. PEDSnet-DBPNet Stakeholder-informed Patient-Centered Research Prioritization for Patients with Intellectual & Development Disabilities (IDD). [Study]. PEDSpace Knowledge Bank. https://hdl.handle.net/20.500.14642/1001

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