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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 - 20 of 20 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:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

Mood Patient-Powered Research Network - Phase I

Massachusetts General Hospital (The General Hospital Corp.)
| Massachusetts
Andrew A. Nierenberg, MD
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

Phelan-McDermid Syndrome Data Network - Phase I

Phelan-McDermid Syndrome Foundation
| Florida
Megan O'Boyle, BA
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

A Multiple Sclerosis Patient-Powered Research Network - Phase I

Accelerated Cure Project for Multiple Sclerosis
| Massachusetts
Robert McBurney, BSc, PhD
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

NephCure Kidney Network for Patients with Nephrotic Syndrome - Phase I

Arbor Research Collaborative for Health
| Michigan
Elizabeth Cope, MPH, PhD^
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

The COPD Patient-Powered Research Network - Phase I

COPD Foundation, Inc.
| Florida
Richard Mularski, MD, MS
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

The CCFA Partners Patient-Powered Research Network - Phase I

Crohn's & Colitis Foundation, Inc
| New York
R. Balfour Sartor, MD
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

Community-Engaged Network for All (CENA) - Phase I

Genetic Alliance, Inc.
| District of Columbia
Sharon Terry, MA
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

PI Patient Research Connection: PI-CONNECT - Phase I

Immune Deficiency Foundation
| Maryland
Kathleen Sullivan, MD, PhD
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

The Vasculitis Patient-Powered Research Network - Phase I

The Trustees of The University of Pennsylvania
| Pennsylvania
Peter Merkel, MD, MPH
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

ALD Connect - Phase I

ALD Connect, Inc.
| Massachusetts
Florian Eichler, MD
Project Status:
PCORnet: Phase I completed
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

Sleep Apnea Patient Centered Outcomes Network (SAPCON) - Phase I

Brigham and Women's Hospital
| Massachusetts
Susan Redline, MD, MPH
Project Status:
PCORnet: Phase I completed
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

ImproveCareNow: A Learning Health System for Children with Crohn's Disease and Ulcerative Colitis - Phase I

Cincinnati Children's Hospital Medical Center
| Ohio
Peter Margolis, MD, PhD
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

Rare Epilepsy Network (REN) - Phase I

Epilepsy Foundation
| Maryland
Janice M. Buelow, PhD, RN
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

The DuchenneConnect Patient-Report Registry Infrastructure Project - Phase I

Parent Project Muscular Dystrophy
| New Jersey
Holly Peay, MS
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

The Health eHeart Alliance - Phase I

University of California San Francisco
| California
Mark Pletcher, MD, MPH
Project Status:
PCORnet: Phase I completed; Phase II in progress
Project Type:
PCORnet: Patient Powered Research Networks (PPRN) Phase I

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