Skip to main content
Patient-Centered Outcomes Research Institute
Patient-Centered Outcomes Research Institute
  • Blog
  • Newsroom
  • Find It Fast
  • Help Center
  • Subscribe
  • Careers
  • Contact Us

PCORI

Patient-Centered Outcomes Research Institute

Search form

  • About Us
    Close mega-menu

    About Us

    • Our Programs
    • Governance
    • Financials and Reports
    • Procurement Opportunities
    • Our Staff
    • Our Vision & Mission
    • Contact Us

    Fact Sheets: Learn More About PCORI

    Download fact sheets about out work, the research we fund, and our programs and initiatives.

    Find It Fast

    Browse through an alphabetical list of frequently accessed and searched terms for information and resources.

    Subscribe to PCORI Email Alerts

    Sign up for weekly emails to stay current on the latest results of our funded projects, and more.

  • Research & Results
    Close mega-menu

    Research & Results

    • Explore Our Portfolio
    • Research Fundamentals
    • Research Results Highlights
    • Putting Evidence to Work
    • Peer Review
    • Evidence Synthesis
    • About Our Research

    Evidence Updates from PCORI-Funded Studies

    These updates capture highlights of findings from systematic reviews and our funded research studies.

    Journal Articles About Our Funded Research

    Browse through a collection of journal publications that provides insights into PCORI-funded work.

    Explore Our Portfolio of Funded Projects

    Find out about projects based on the health conditions they focus on, the state they are in, and if they have results.

  • Topics
    Close mega-menu

    Topics

    • Addressing Disparities
    • Arthritis
    • Asthma
    • Cancer
    • Cardiovascular Disease
    • Children's Health
    • Community Health Workers
    • COVID-19
    • Dementia and Cognitive Impairment
    • Diabetes
    • Kidney Disease
    • Medicaid
    • Men's Health
    • Mental and Behavioral Health
    • Minority Mental Health
    • Multiple Chronic Conditions
    • Multiple Sclerosis
    • Obesity
    • Older Adults' Health
    • Pain Care and Opioids
    • Rare Diseases
    • Rural Health
    • Shared Decision Making
    • Telehealth
    • Transitional Care
    • Veterans Health
    • Women's Health

    Featured Topic: Women's Health

    Learn more about the projects we support on conditions that specifically or more often affect women.

  • Engagement
    Close mega-menu

    Engagement

    • The Value of Engagement
    • Engagement in Health Research Literature Explorer
    • Influencing the Culture of Research
    • Engagement Awards
    • Engagement Resources
    • Engage with Us

    Engagement Tools and Resources for Research

    This searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research.

    Explore Engagement in Health Literature

    This tool enables searching for published articles about engagement in health research.

    Research Fundamentals: A New On-Demand Training

    It enables those new to health research or patient-centered research to learn more about the research process.

  • Funding Opportunities
    Close mega-menu

    Funding Opportunities

    • What & Who We Fund
    • What You Need to Know to Apply
    • Applicant Training
    • Merit Review
    • Awardee Resources
    • Help Center

    PCORI Funding Opportunities

    View and learn about the newly opened funding announcements and the upcoming PFAs in 2021.

    Tips for Submitting a Responsive LOI

    Find out what PCORI looks for in a letter of intent (LOI) along with other helpful tips.

    PCORI Awardee Resources

    These resources can help awardees in complying with the terms and conditions of their contract.

  • Meetings & Events
    Close mega-menu

    Meetings & Events

    • Upcoming
    • Past Events

    January 2021 Board of Governors Meeting

    The Board approved funding for a new research study relating to kidney health and a new funding allocation for PCORnet. Learn more

    Confronting COVID-19: A Webinar Series

    Learn more about the series and access recordings and summary reports of all six sessions.

    2020 PCORI Annual Meeting

    Watch recordings of all sessions, and view titles and descriptions of the posters presented at the virtual meeting.

You are here

  • Research & Results
  • Explore Our Portfolio
  • Building Capacity for Patient Centere...

Building Capacity for Patient Centered Outcomes Research in Pediatric Dermatology

Project Summary  

Background: Childhood skin diseases are prevalent and take a devastating toll on the physical, social, and psychological well-being of children and their families. Despite this impact, treatment options are limited and research progress has been slow. The Pediatric Dermatology Research Alliance (PeDRA) was formed to overcome these obstacles and is now at the forefront of the field.

Proposed Solution to the Problem: It is necessary to ensure that the patient perspective remains at the center of PeDRA’s activities as it drives the field of pediatric dermatology research forward. Therefore, PeDRA will establish the capacity for sustained, meaningful engagement with patients with childhood skin diseases and their families. 

Objectives:

  • Create an educated cohort of stakeholders from the patient and researcher communities and provide them with resources to ask and answer high-priority research questions in pediatric dermatology.
  • Establish infrastructure for sustained engagement between stakeholders from the patient and researcher communities in pediatric dermatology. The far-reaching impact of the project is an improvement in the ability of patients, families, and healthcare providers to make informed healthcare decisions from a list of meaningful and effective options to manage disease.

Activities: PeDRA will overhaul its existing website to include a hub for patient engagement in research and bidirectional education between patients and researchers. It will go on to facilitate in-person engagement between patients and researchers at the PeDRA Annual Conference and at meetings of patient advocacy organizations. Finally, it will establish a standing patient advisory committee (PeDRA-PAC) to provide patient stakeholders with a perpetual seat at the table of pediatric dermatology research.

Outcomes/Outputs (projected):

  • Increased capacity for pediatric dermatology researchers to conduct patient-centered research.
  • An educated and empowered community of patient stakeholders engaged with pediatric dermatology research.
  • An infrastructure for sustained patient engagement.
  • The execution of large-scale studies that address multiple childhood skin diseases.

Patient and Stakeholder Engagement Plan: Patients will be engaged with the help of 10 supporting patient advocacy organizations, with the hope that additional groups will collaborate with PeDRA to reach their patient audiences over the course of the project. PeDRA’s members will also be mobilized to engage patients and families through their clinics and professional networks.

Project Collaborators: PeDRA has the support of 10 patient advocacy organizations (National Eczema Association, Global Parents for Eczema Research, National Alopecia Areata Foundation, Nevus Outreach, Sturge-Weber Foundation, PHACE Syndrome Community, Foundation for Ichthyosis and Related Skin Types, EB Research Partnership, Epidermolysis Bullosa Medical Research Foundation, Pachyonychia Congenita Project, and the creative agency Hales Creative (Provo, Utah) on this project.

Engagement Resources

Pediatric Dermatology Research Alliance (PeDRA) Webinars for Researchers, Clinicians, and Patients

More on this Project  

Project Website

PeDRA Education for Researchers and Families

Project Details

Project Status
Awarded; In progress
Project Lead
Michael Siegel, PhD
Project Period
24 months
Organization
Pediatric Dermatology Research Alliance
Year Awarded
2019
State
Indiana
Project Type
Engagement Award Project
Project Budget
$219,006
Page Last Updated: 
December 26, 2019

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

About Us

  • Our Programs
  • Governance
  • Financials and Reports
  • Procurement Opportunities
  • Our Staff
  • Our Vision & Mission
  • Contact Us

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

Engagement

  • The Value of Engagement
  • Engagement in Health Research Literature Explorer
  • Influencing the Culture of Research
  • Engagement Awards
  • Engagement Resources
  • Engage with Us

Funding Opportunities

  • What & Who We Fund
  • What You Need to Know to Apply
  • Applicant Training
  • Merit Review
  • Awardee Resources
  • Help Center

Meetings & Events

January 21
Cycle 1 2021 Broad PFA Applicant Town Hall
February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021

PCORI

Footer contact address

Patient-Centered Outcomes
Research Institute

1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
[email protected]

Subscribe to Newsletter

Twitter Facebook LinkedIn Vimeo

© 2011-2021 Patient-Centered Outcomes Research Institute. All Rights Reserved.

Privacy Policy | Terms of Use | Trademark Usage Guidelines | Credits | Help Center