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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
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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)

Systematic, Collaborative, PFO closure Evaluation (SCOPE) Study Conference: Research-Related Conference Support Award

Tufts Medical Center
| Massachusetts
David M. Kent, MD, MS
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

American BRCA Outcomes and Utilization of Testing: A Participant-Powered Research Network

University of South Florida
| Florida
Rebecca Sutphen, MD
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

National Alzheimer's & Dementia Patient- & Caregiver-Powered Research Network

Mayo Clinic
| Minnesota
Ronald Petersen, MD, PhD^
Project Status:
Completed; PCORI Public and Professional Abstracts Posted
Project Type:
PCORnet®: Patient Powered Research Networks (PPRN) Phase II
Has Results

Patients, Advocates, and Rheumatology Teams for Research and Service (PARTNERS)

Duke University
| North Carolina
Laura Schanberg, MD
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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