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The COPD Patient-Powered Research Network
Investigator (PI): Mularski, Richard
Performing Organization (PO): (Current): COPD Foundation / (866) 731-2673
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2015
Record Source/Award ID: PCORI/PPRN-1306-04748
Funding: Total Award Amount: $1,000,611
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: The Chronic Obstructive Pulmonary Disease (COPD) Foundation, in collaboration with the CONCERT and COPDGene research networks proposes to develop and host the COPD Foundation Patient-Powered Research Network (PPRN). The collaboration brings together a patient developed and governed patient education, advocacy. and support group with the research expertise of two federally funded research networks to establish the COPD Foundation PPRN. The COPD Foundation PPRN will enroll 100,000 people with COPD, approximately 0.5% of the US COPD population, into a registry with scalable data hub for the sole purpose of supporting patient-driven, patient-centered outcomes research (PCOR). Enrolled patients will represent the spectrum of COPD disease severity most with multiple morbidities, across diverse geographic regions, broad age and socioeconomic ranges, both genders, and all racial and ethnic groups. Chronic obstructive pulmonary disease (COPD) is a critical part of US health care affecting 12-24 million individuals in the nation, is responsible for 800,000 hospitalizations per year, and recently became America's third leading cause of death. COPD-related health expenditures are estimated to be as high as $50 billion per year, driven primarily by costs of hospitalization and a 25% hospital 30-day readmission rate. Health care expenditures for re-hospitalizations in patients with COPD exacerbations rank as the third highest among Medicare beneficiaries; provisions in the 2010 Affordable Care Act specifically list re-hospitalizations within 30 days after COPD exacerbations as a target for potential financial penalties by the Centers for Medicare & Medicaid Services (CMS). In recognition of the substantial and increasing impact of COPD on the health of the U.S. population, the U.S. Centers for Disease Control, the National Heart, Lung, and Blood Institute (NHLBI), and others have recently collaborated in the development of public and health professionals awareness campaigns to increase disease understanding, reduce stigma, and foster the use of evidence-based treatment and prevention approaches for COPD. The continuing lag between clinical practice and treatment options, described by efficacy studies to improve the quality of life, functional status, and survival in patients with COPD, make COPD ripe for patient-centered outcomes research. The COPD Foundation is a national not-for-profit organization established by patients in 2004 that is solely dedicated to representing individuals with chronic obstructive pulmonary disease in the United States. The mission of the COPD Foundation is to improve the quality of life for those affected by COPD. The Foundation's activities span research, education, and public health/policy related programs and services to patients, caregivers, and health care providers. The collaboration with the two large, federally funded research networks (CONCERT and COPDGene) will both expand services and capacities of the Foundation as a PPRN and enhance the ability of CONCERT, COPDGene, and others within the PCORI infrastructure to conduct PCOR empowered by patients with COPD. The COPD Foundation will lead an effort to expand its current network with registrants to its PPRN willing to share clinical information and patient-reported outcomes (PRO), and participate in PCOR. Active outreach for enrollment will include the 228,701 patients with linked administrative and clinical data of the CONCERT network as well as another 10,300 with patient-reported outcomes and genetic data of the COPDGene network. COPD patients currently enrolled in the existing research studies will have the benefit of outreach and participation in the Foundation's other activities including peer health coaching and extensive educational material maintained by the COPD Foundation. Amongst the participants in the CONCERT data hub, outreach can take advantage of existing demographic data across its diverse health care delivery sites and regions to target under-represented groups, including those defined in terms of race/ethnicity, socioeconomic status, geographic location, clinical severity, and multi-morbidity. From this large pool of patients with currently available data and the members across the COPD Foundation and affiliates networks, we are confident we can enroll at least 100,000 patients who will provide PRO and demographic information and sign comprehensive consent and data sharing agreements to allow common shared data use for the COPD Foundation PPRN and across PCORI networks.
MeSH Terms:
  • Access to Information
  • Biomedical Research /*organization & administration
  • Centers for Medicare and Medicaid Services, U.S.
  • Data Collection
  • Evidence-Based Medicine
  • Foundations
  • Health Care Costs
  • Hospitalization
  • Humans
  • Medicare
  • Outcome Assessment, Health Care
  • Patient Participation
  • Patient Selection
  • Patient-Centered Care
  • Pulmonary Disease, Chronic Obstructive /*diagnosis
  • /epidemiology /*therapy
  • Quality of Life
  • Registries
  • United States
Country: United States
State: District of Columbia
Zip Code: 20001
UI: 20143612
Project Status: Completed
Related Records: The COPD Patient-Powered Research Network: phase II