The Bronchiectasis Research Registry poster.pptx [Read-Only] · created the Bronchiectasis Research...
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The Bronchiectasis Research Registry Clinical, Microbiologic, and Treatment Characteristics M.L. O'Connell 1 , D.R. Prevots 1 , K.N. Olivier 1 , L. LaVange 2 , B. Thomashow 3 , M.R. Knowles 2 , C.L. Daley 4 , T. Aksamit 5 , A. O'Donnell 6 for the Bronchiectasis Research Consortium 1 National Institute of Allergy and Infectious Diseases, Bethesda, MD 2 University of North Carolina, Chapel Hill, NC 3 Columbia University Medical Center, NY 4 National Jewish Health, CO 5 Mayo Clinic, MN 6 Georgetown University Hospital, DC The Bronchiectasis Research Registry Clinical, Microbiologic, and Treatment Characteristics M.L. O'Connell 1 , D.R. Prevots 1 , K.N. Olivier 1 , L. LaVange 2 , B. Thomashow 3 , M.R. Knowles 2 , C.L. Daley 4 , T. Aksamit 5 , A. O'Donnell 6 for the Bronchiectasis Research Consortium 1 National Institute of Allergy and Infectious Diseases, Bethesda, MD 2 University of North Carolina, Chapel Hill, NC 3 Columbia University Medical Center, NY 4 National Jewish Health, CO 5 Mayo Clinic, MN 6 Georgetown University Hospital, DC Results and Figures Results and Figures A consortium of US academic institutions supported by the COPD Foundation created the Bronchiectasis Research Registry as a consolidated database of non- cystic fibrosis bronchiectasis patients. The overarching goal of this registry is to support collaborative research and facilitate future therapeutic clinical trials in bronchiectasis. Other aims for the registry include: •Demonstrate patterns of bronchiectasis patient characteristics by obtaining pertinent background information concerning rates of concomitant illnesses, medications, or other disease related information. • Facilitate planning of therapeutic clinical trials by generating lists of patients who satisfy inclusion/ exclusion criteria. A consortium of US academic institutions supported by the COPD Foundation created the Bronchiectasis Research Registry as a consolidated database of non- cystic fibrosis bronchiectasis patients. The overarching goal of this registry is to support collaborative research and facilitate future therapeutic clinical trials in bronchiectasis. Other aims for the registry include: •Demonstrate patterns of bronchiectasis patient characteristics by obtaining pertinent background information concerning rates of concomitant illnesses, medications, or other disease related information. • Facilitate planning of therapeutic clinical trials by generating lists of patients who satisfy inclusion/ exclusion criteria. •The Registry, maintained by the Collaborative Studies Coordinating Center at UNC in Chapel Hill, consists of a secure, web-based data management and interactive reporting system for the collection, processing, storage, and analysis of data. • Using the Registry’s standard and custom reporting features, the data base was queried for demographic and clinical variables that may be of interest for clinical trial enrollment criteria. •Clinical information was available for standard query on 484 patients • Standard reports are always available, and content is updated nightly to reflect registry enrollment as of the previous day. User generated reports are based on specified combinations of variables, graph type, and restrictions. Background Background Materials and Methods Materials and Methods Results and Figures Results and Figures This bronchiectatis patient population represents an ideal source for evaluation of new therapies. These patients: •Suffer from high rates of pulmonary symptoms •Have high frequencies of bacterial and mycobacterial infection •Are currently using pharmaceutical and non-pharmaceutical therapeutic measures for disease management. Limitations: •This population may not be fully representative of the general U.S bronchiectasis population because the sample is biased towards more severe disease and referral bias of participating institutions. This bronchiectatis patient population represents an ideal source for evaluation of new therapies. These patients: •Suffer from high rates of pulmonary symptoms •Have high frequencies of bacterial and mycobacterial infection •Are currently using pharmaceutical and non-pharmaceutical therapeutic measures for disease management. Limitations: •This population may not be fully representative of the general U.S bronchiectasis population because the sample is biased towards more severe disease and referral bias of participating institutions. Non-cystic fibrosis bronchiectasis is a progressive, non- curable disease of the lungs. It is characterized by inflamed or abnormally dilated thick walled bronchi and chronic pulmonary bacterial infections, and is associated with significant morbidity and mortality. This comprehensive patient registry may be of interest to researchers interested in conducting exploratory or hypothesis-generating research to examine etiologies of Bronchiectasis. Non-cystic fibrosis bronchiectasis is a progressive, non- curable disease of the lungs. It is characterized by inflamed or abnormally dilated thick walled bronchi and chronic pulmonary bacterial infections, and is associated with significant morbidity and mortality. This comprehensive patient registry may be of interest to researchers interested in conducting exploratory or hypothesis-generating research to examine etiologies of Bronchiectasis. Introduction Introduction Summary/ Limitations Summary/ Limitations Overall Pulmonary Function: FVC % Predicted Overall Pulmonary Function: FEV1 % Predicted Nasal Nitric Oxide Funding for the Bronchiectasis Research Registry is provided by the COPD Foundation and the Richard H. Scarborough Fund for Bronchiectasis. Funding for the Bronchiectasis Research Registry is provided by the COPD Foundation and the Richard H. Scarborough Fund for Bronchiectasis. Collaborative Studies Coordinating Center, UNC at Chapel Hill Columbia University Medical Center New York University Medical Center Bethesda, MD, NIAID NIH University of North Carolina at Chapel Hill Columbia University Medical Center Georgetown University Hospital University of Illinois Medical Center Mayo Clinic Veterans Administration National Jewish Medical Center Oregon Health and Science University Support Support
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The Bronchiectasis Research RegistryClinical, Microbiologic, and Treatment Characteristics
M.L. O'Connell1, D.R. Prevots1, K.N. Olivier1, L. LaVange2, B. Thomashow3, M.R. Knowles2, C.L. Daley4, T. Aksamit5, A. O'Donnell6 for the Bronchiectasis Research Consortium
1National Institute of Allergy and Infectious Diseases, Bethesda, MD 2University of North Carolina, Chapel Hill, NC 3Columbia University Medical Center, NY 4National Jewish Health, CO 5Mayo Clinic, MN 6Georgetown University Hospital, DC
The Bronchiectasis Research RegistryClinical, Microbiologic, and Treatment Characteristics
M.L. O'Connell1, D.R. Prevots1, K.N. Olivier1, L. LaVange2, B. Thomashow3, M.R. Knowles2, C.L. Daley4, T. Aksamit5, A. O'Donnell6 for the Bronchiectasis Research Consortium
1National Institute of Allergy and Infectious Diseases, Bethesda, MD 2University of North Carolina, Chapel Hill, NC 3Columbia University Medical Center, NY 4National Jewish Health, CO 5Mayo Clinic, MN 6Georgetown University Hospital, DC
Results and FiguresResults and Figures
A consortium of US academic institutions supported by the COPD Foundation created the Bronchiectasis Research Registry as a consolidated database of non-cystic fibrosis bronchiectasis patients. The overarching goal of this registry is to support collaborative research and facilitate future therapeutic clinical trials in
bronchiectasis. Other aims for the registry include:
•Demonstrate patterns of bronchiectasis patient characteristics by obtaining pertinent background information concerning rates of concomitant illnesses, medications, or other disease related information.
• Facilitate planning of therapeutic clinical trials by generating lists of patients who satisfy inclusion/ exclusion criteria.
A consortium of US academic institutions supported by the COPD Foundation created the Bronchiectasis Research Registry as a consolidated database of non-cystic fibrosis bronchiectasis patients. The overarching goal of this registry is to support collaborative research and facilitate future therapeutic clinical trials in
bronchiectasis. Other aims for the registry include:
•Demonstrate patterns of bronchiectasis patient characteristics by obtaining pertinent background information concerning rates of concomitant illnesses, medications, or other disease related information.
• Facilitate planning of therapeutic clinical trials by generating lists of patients who satisfy inclusion/ exclusion criteria.
•The Registry, maintained by the Collaborative Studies Coordinating Center at UNC in Chapel Hill, consists of a secure, web-based data management and interactive reporting system for the collection, processing, storage, and analysis of data.
• Using the Registry’s standard and custom reporting features, the data base was queried for demographic and clinical variables that may be of interest for clinical trial enrollment criteria.
•Clinical information was available for standard query on 484 patients
• Standard reports are always available, and content is updated nightly to reflect registry enrollment as of the previous day. User generated reports are based on specified combinations of variables, graph type, and restrictions.
BackgroundBackground
Materials and MethodsMaterials and Methods
Results and FiguresResults and Figures
This bronchiectatis patient population represents an ideal source for evaluation of new therapies. These patients:
•Suffer from high rates of pulmonary symptoms•Have high frequencies of bacterial and mycobacterial infection•Are currently using pharmaceutical and non-pharmaceutical therapeutic measures for disease management.
Limitations:•This population may not be fully representative of the general U.S bronchiectasis population because the sample is biased towards more severe disease and referral bias of participating institutions.
This bronchiectatis patient population represents an ideal source for evaluation of new therapies. These patients:
•Suffer from high rates of pulmonary symptoms•Have high frequencies of bacterial and mycobacterial infection•Are currently using pharmaceutical and non-pharmaceutical therapeutic measures for disease management.
Limitations:•This population may not be fully representative of the general U.S bronchiectasis population because the sample is biased towards more severe disease and referral bias of participating institutions.
Non-cystic fibrosis bronchiectasis is a progressive, non-curable disease of the lungs. It is characterized by inflamed orabnormally dilated thick walled bronchi and chronic pulmonary bacterial infections, and is associated with significant morbidity and mortality. This comprehensive patient registry may be of interest to researchers interested in conducting exploratory or hypothesis-generating research to examine etiologies of Bronchiectasis.
Non-cystic fibrosis bronchiectasis is a progressive, non-curable disease of the lungs. It is characterized by inflamed orabnormally dilated thick walled bronchi and chronic pulmonary bacterial infections, and is associated with significant morbidity and mortality. This comprehensive patient registry may be of interest to researchers interested in conducting exploratory or hypothesis-generating research to examine etiologies of Bronchiectasis.
IntroductionIntroduction
Summary/ LimitationsSummary/ Limitations
Overall Pulmonary Function: FVC % Predicted
Overall Pulmonary Function: FEV1 % Predicted
Nasal Nitric Oxide
Funding for the Bronchiectasis Research Registry is provided by the COPD Foundation and the Richard H. Scarborough Fund for Bronchiectasis.Funding for the Bronchiectasis Research Registry is provided by the COPD Foundation and the Richard H. Scarborough Fund for Bronchiectasis.
Collaborative Studies
Coordinating Center, UNC at Chapel Hill
Columbia University Medical
Center
New York University
Medical Center
Bethesda, MD, NIAID NIH
University of North Carolina at Chapel Hill
Columbia University
Medical Center
Georgetown University Hospital
University of Illinois Medical
Center
Mayo Clinic
Veterans Administration
National Jewish Medical Center
Oregon Health and Science University
SupportSupport
