"Project Title","Organization","Project Budget","Project Period","Organization","Awarded","Project Start Date","Project End Date","Award Type: Research","Principal Investigator","Other Principal Investigator","Primary Disease/Condition","Research Priority Area","Patient/Caregiver Partners","Other Stakeholder Partners","Award Type: Research Support","Project Lead","Project Status","State","URL","Award Type: Research Dissemination and Implementation"
"A Stakeholder-Driven Comparative Effectiveness Study of Treatments to Prevent Coronary Artery Damage in Patients with Resistant Kawasaki Disease","University of California San Diego","$2,341,063","37 months","University of California San Diego","2016","December 2016","January 2020","Assessment of Prevention, Diagnosis, and Treatment Options","Jane Burns, MD","Katherine K. Kim, PhD, MPH, MBA","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","Greg Chin, KD Foundation","No information provided by awardee.","","","Awarded; In progress-Not yet recruiting","California","http://www.pcori.org/research-results/2016/stakeholder-driven-comparative-effectiveness-study-treatments-prevent-coronary",""
"A Comparison: High Intense Periodic vs. Every Week Therapy in Children with Cerebral Palsy (ACHIEVE)","The Ohio State University","$3,029,592 ","52 months","The Ohio State University","2016","May 2016","September 2020","Assessment of Prevention, Diagnosis, and Treatment Options","Jill C. Heathcock, PhD, PT","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","Erin Thomas, adult patient
Nathalie Maitre, parent
Clark Family (Mother/older child team)
Heather Byer, Reaching for the stars
Cara Layne, parent
Sue Addingon, parent
Josephine Kirk, parent
March of Dimes
Nisonger Center","Warren Lo, Nationwide Children's Hospital
Samantha Peterson, Early Childhood Education
TBN Insurance representative","","","Awarded; In progress-Recruiting","Ohio","http://www.pcori.org/research-results/2016/comparison-high-intense-periodic-vs-every-week-therapy-children-cerebral-palsy",""
"Comparative Effectiveness and Safety of Inhaled Corticosteroids and Antimicrobial Compounds for Non-CF Bronchiectasis","Oregon Health & Science University","$1,842,768","39 months","Oregon Health & Science University","2015","September 2015","December 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Kevin Winthrop, MD, MPH","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruitment not applicable","Oregon","http://www.pcori.org/research-results/2015/comparative-effectiveness-and-safety-inhaled-corticosteroids-and-antimicrobial",""
"Comparative Effectiveness of Therapy in Rare Diseases: Liver Transplantation vs. Conservative Management of Urea Cycle Disorders","Children's Research Institute","$2,092,011 ","40 months","Children's Research Institute","2015","September 2015","January 2019","Assessment of Prevention, Diagnosis, and Treatment Options","Nicholas Ah Mew, MD^","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","District of Columbia","http://www.pcori.org/research-results/2015/comparative-effectiveness-therapy-rare-diseases-liver-transplantation-vs",""
"Posterior Fossa Decompression with or without Duraplasty for Chiari Type I Malformation with Syringomyelia","Washington University School of Medicine","$2,755,216 ","47 months","Washington University School of Medicine","2015","September 2015","August 2019","Assessment of Prevention, Diagnosis, and Treatment Options","David Limbrick, MD, MS, PhD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Missouri","http://www.pcori.org/research-results/2015/posterior-fossa-decompression-or-without-duraplasty-chiari-type-i-malformation",""
"Home or Away from Home: Comparing Clinician and Patient/Family-Centered Outcomes Relevant to the Care of Pediatric Acute Myeloid Leukemia during Periods of Neutropenia","The Children's Hospital of Philadelphia"," $1,845,393","40 months","The Children's Hospital of Philadelphia","2015","April 2015","August 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Richard Aplenc, MD, PhD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Pennsylvania","http://www.pcori.org/research-results/2015/home-or-away-home-comparing-clinician-and-patientfamily-centered-outcomes",""
"Treatment Alternatives in Adult Rare Disease; Assessment of Options in Idiopathic Subglottic Stenosis","Vanderbilt University","$2,189,308","41 months","Vanderbilt University","2015","April 2015","September 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Alexander Gelbard, MD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Tennessee","http://www.pcori.org/research-results/2015/treatment-alternatives-adult-rare-disease-assessment-options-idiopathic",""
"Comparative Effectiveness of CARRA Treatment Strategies for Polyarticular Juvenile Idiopathic Arthritis","Hackensack University Medical Center","$2,603,156 ","45 months","Hackensack University Medical Center","2015","April 2015","January 2019","Assessment of Prevention, Diagnosis, and Treatment Options","Yukiko Kimura, BS, MD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","New Jersey","http://www.pcori.org/research-results/2015/comparative-effectiveness-carra-treatment-strategies-polyarticular-juvenile",""
"Intervention and Outcomes in Duarte Galactosemia","Emory University","$2,529,864","42 months","Emory University","2015","April 2015","October 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Judith L. Fridovich-Keil, AB, PhD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Georgia","http://www.pcori.org/research-results/2015/intervention-and-outcomes-duarte-galactosemia",""
"Anti-TNF Monotherapy versus Combination Therapy with Low Dose Methotrexate in Pediatric Crohn’s Disease","The University of North Carolina at Chapel Hill","$7,885,900","69 months","The University of North Carolina at Chapel Hill","2015","April 2015","January 2021","Pragmatic Clinical Studies and Large Simple Trials to Evaluate Patient-Centered Outcomes","Michael Kappelman, MD, MPH","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","North Carolina","http://www.pcori.org/research-results/2015/anti-tnf-monotherapy-versus-combination-therapy-low-dose-methotrexate",""
"Comparing Patient Centered Outcomes in the Management of Pain between Emergency Departments and Dedicated Acute Care Facilities for Adults with Sickle Cell Disease","Johns Hopkins University","$4,291,732","54 months","Johns Hopkins University","2014","September 2014","March 2019","Improving Healthcare Systems","Sophie Lanzkron, MD, MHS","","Rare Diseases","Improving Healthcare Systems","","","","","Awarded; In progress-Recruiting","Maryland","http://www.pcori.org/research-results/2014/comparing-patient-centered-outcomes-management-pain-between-emergency",""
"Comparative Efficacy of Therapies for Eosinophilic Esophagitis","Cincinnati Children's Hospital Medical Center","$2,622,823 ","42 months","Cincinnati Children's Hospital Medical Center","2014","September 2014","March 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Marc Rothenberg, MD, PhD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Ohio","http://www.pcori.org/research-results/2014/comparative-efficacy-therapies-eosinophilic-esophagitis",""
"A Randomized Controlled Trial of Anterior Versus Posterior Entry Site for Cerebrospinal Fluid Shunt Insertion","Baylor College of Medicine","$2,514,293 ","54 months","Baylor College of Medicine","2014","September 2014","March 2019","Assessment of Prevention, Diagnosis, and Treatment Options","William Whitehead, MD, MPH","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Texas","http://www.pcori.org/research-results/2014/randomized-controlled-trial-anterior-versus-posterior-entry-site-cerebrospinal",""
"The Impact of Self-Management with Probiotics on Urinary Symptoms and the Urine Microbiome in Individuals with Spinal Cord Injury and Spina Bifida","MedStar Health Research Institute","$1,772,718","44 months","MedStar Health Research Institute","2014","July 2014","March 2018","Addressing Disparities","Suzanne Groah, MD, MPH","","Rare Diseases","Addressing Disparities","","","","","Awarded; In progress-Recruiting","Maryland","http://www.pcori.org/research-results/2014/impact-self-management-probiotics-urinary-symptoms-and-urine-microbiome",""
"Taking Charge of Systemic Sclerosis: Improving Patient Outcomes Through Self-Management","University of New Mexico Health Sciences Center","$1,771,785 ","40 months","University of New Mexico Health Sciences Center","2014","July 2014","November 2017","Assessment of Prevention, Diagnosis, and Treatment Options","Janet L. Poole, PhD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruitment complete","New Mexico","http://www.pcori.org/research-results/2014/taking-charge-systemic-sclerosis-improving-patient-outcomes-through-self",""
"Enhancing Genomic Laboratory Reports to Enhance Communication and Empower Patients","Weis Center For Research-Geisinger Clinic","$1,417,960","40 months","Weis Center For Research-Geisinger Clinic","2013","September 2013","December 2016","Communication and Dissemination Research","Marc S. Williams, MD","","Rare Diseases","Communication and Dissemination Research","","","","","Awarded; In progress-Recruitment complete","Pennsylvania","http://www.pcori.org/research-results/2013/enhancing-genomic-laboratory-reports-enhance-communication-and-empower",""
"Patient-Centered Comprehensive Medication Adherence Management System to Improve Effectiveness of Disease Modifying Therapy with Hydroxyurea in Patients with Sickle Cell Disease","Emory University ^","$1,947,326 ","53 months","Emory University ^","2013","September 2013","January 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Lakshmanan Krishnamurti, MD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Georgia","http://www.pcori.org/research-results/2013/patient-centered-comprehensive-medication-adherence-management-system-improve",""
"Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate (CAPTURE) Study","University of Texas Southwestern Medical Center/Dallas","$1,458,488","52 months","University of Texas Southwestern Medical Center/Dallas","2013","September 2013","December 2017","Assessment of Prevention, Diagnosis, and Treatment Options","Benjamin Morris Greenberg, MD, MS","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruiting","Texas","http://www.pcori.org/research-results/2013/collaborative-assessment-pediatric-transverse-myelitis-understand-reveal",""
"Tools and Information to Guide Choice of Therapies in Older & Medically Infirm Patients with AML","Fred Hutchinson Cancer Research Center","$2,749,818 ","53 months","Fred Hutchinson Cancer Research Center","2013","September 2013","January 2018","Assessment of Prevention, Diagnosis, and Treatment Options","Mohamed Lotfy Sorror, MD, MS","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruitment complete","Washington","http://www.pcori.org/research-results/2013/tools-and-information-guide-choice-therapies-older-medically-infirm-patients",""
"Comparative Effectiveness of a Decision Aid for Therapeutic Options in Sickle Cell Disease","Emory University ^","$1,718,415 ","48 months","Emory University ^","2013","May 2013","April 2017","Assessment of Prevention, Diagnosis, and Treatment Options","Lakshmanan Krishnamurti, MD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruitment complete","Georgia","http://www.pcori.org/research-results/2013/comparative-effectiveness-decision-aid-therapeutic-options-sickle-cell-disease",""
"Individualized Patient Decision Making for Treatment Choices among Minorities with Lupus","University of Alabama at Birmingham","$1,513,089 ","45 months","University of Alabama at Birmingham","2013","September 2013","May 2017","Assessment of Prevention, Diagnosis, and Treatment Options","Jasvinder Singh, MBBS, MPH","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruitment complete","Alabama","http://www.pcori.org/research-results/2013/individualized-patient-decision-making-treatment-choices-among-minorities",""
"Developmental Trajectories of Impairments, Health, and Participation of Children with Cerebral Palsy","University of Washington","$1,906,955","52 months","University of Washington","2013","May 2013","August 2017","Assessment of Prevention, Diagnosis, and Treatment Options","Sarah Westcott McCoy, PhD","","Rare Diseases","Assessment of Prevention, Diagnosis, and Treatment Options","","","","","Awarded; In progress-Recruitment complete","Washington","http://www.pcori.org/research-results/2013/developmental-trajectories-impairments-health-and-participation-children",""
"Decision Support for Parents Receiving Genetic Information about Child's Rare Disease","University of Michigan at Ann Arbor","$1,418,310","60 months","University of Michigan at Ann Arbor","2012","December 2012","December 2017","Communication and Dissemination Research","David E. Sandberg, PhD","","Rare Diseases","Communication and Dissemination Research","","","","","Completed; Preparing draft final research report","Michigan","http://www.pcori.org/research-results/2012/decision-support-parents-receiving-genetic-information-about-childs-rare",""
"Relapsed Childhood Neuroblastoma as a Model for Parental End-of-Life Decision-Making","Dana-Farber Cancer Institute","$985,992 ","34 months","Dana-Farber Cancer Institute","2012","December 2012","October 2015","Communication and Dissemination Research","Jennifer W. Mack, MD, MPH","","Rare Diseases","Communication and Dissemination Research","","","","","Terminated","Massachusetts","http://www.pcori.org/research-results/2012/relapsed-childhood-neuroblastoma-model-parental-end-life-decision-making",""