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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Health Condition Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Year Awarded Year Awarded The year the PCORI Board of Governors approved funding for the project or the year the proposal received a notice of award. View Glossary
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Displaying 1 - 23 of 23 results

Project Title
Project Status
Project Type

Supporting Families' Treatment Decisions with Evidence on Treatment of Urea Cycle Disorders

Children's National Health System
| District of Columbia
Nicholas Ah Mew, MD
Project Status:
In progress; Recruitment not applicable
Project Type:
Dissemination Project (Limited Competition D&I PFA)
Project Status:
Awarded; In progress
Project Type:
Engagement Award Conference: Evidence Synthesis

Designing a Clinical Trial Repository for Pediatric Obsessive-Compulsive Disorders: Research-Related Conference Support Award

Pediatric Anxiety Research Center (PARC), Bradley Hospital
| Rhode Island
Jennifer Freeman, PhD
Project Status:
Awarded; In progress
Project Type:
Engagement Award Conference: Evidence Synthesis
Has Results

Rare Epilepsy Network

Epilepsy Foundation
| Maryland
Brandy Fureman, PhD^
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

Community and Patient Partnered Research Network (CPPRN)

University of California, Los Angeles
| California
Kenneth Wells, MD, MPH
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

The COPD Patient-Powered Research Network

COPD Foundation, Inc.
| Florida
Barbara Yawn, MD^
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

Community Engaged Network for All (CENA)

Genetic Alliance, Inc.
| District of Columbia
Sharon Terry, MA
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

Primary Immunodeficiency Connect (PI CONNECT)

Immune Deficiency Foundation
| Maryland
Kathleen Sullivan, MD, PhD
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

The Health eHeart Alliance

University of California, San Francisco
| California
Mark Pletcher, MD, MPH
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

DuchenneConnect Network

Parent Project Muscular Dystrophy
| New Jersey
Abby Bronson, MBA^
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

Phelan-McDermid Syndrome Data Network (PMS_DN)

Phelan-McDermid Syndrome Foundation
| Florida
Megan O'Boyle, BA
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

MoodNetwork

Massachusetts General Hospital (The General Hospital Corp.)
| Massachusetts
Andrew A. Nierenberg, MD
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

The Vasculitis Patient-Powered Research Network

University of Pennsylvania
| Pennsylvania
Peter Merkel, MD, MPH
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

iConquerMS: A Participant-Powered Research Network

Accelerated Cure Project for Multiple Sclerosis
| Massachusetts
Robert McBurney, BSc, PhD
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

PCORnet Patient-Powered Research Network Phase ll: ImproveCareNow Network

Cincinnati Children's Hospital Medical Center
| Ohio
Peter Margolis, MD, PhD
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

PRIDEnet: A Participant-Powered Research Network of Sexual and Gender Minorities

University of California, San Francisco
| California
Mitchell R. Lunn, MD
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

Interactive Autism Network

Hugo W. Moser Research Institute Kennedy Krieger
| Maryland
Jessica Law, MD, MPH
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

IBD Partners: A Participant-Powered Research Network of Patients with Crohn's Disease and Ulcerative Colitis

The University of North Carolina at Chapel Hill
| North Carolina
Michael Kappelman, MD, MPH^
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

ArthritisPower (ARthritis Partnership with Comparative Effectiveness Researchers)

Global Healthy Living Foundation
| New York
Seth Ginsberg, BS
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II
Has Results

NephCure Kidney Network (NKN)

Arbor Research Collaborative for Health
| Michigan
Michelle Denburg, MD, MSCE^
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase II

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