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Peter R. Carroll - One of the best experts on this subject based on the ideXlab platform.
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The example of CaPSURE: lessons learned from a national Disease Registry
World journal of urology, 2011Co-Authors: Sima P. Porten, Matthew R. Cooperberg, Badrinath R. Konety, Peter R. CarrollAbstract:Introduction Although randomized controlled trials (RCTs) remain the gold standard for determining evidence-based clinical practices, large Disease registries that enroll large numbers of patients have become paramount as a relatively cost-effective additional tool.
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Sociodemographic predictors of prostate cancer risk category at diagnosis: unique patterns of significant and insignificant Disease.
The Journal of urology, 2009Co-Authors: Marc A. Dall'era, Janet E. Cowan, Nap Hosang, Badrinath R. Konety, Peter R. CarrollAbstract:Purpose: We determined various sociodemographic predictors of prostate cancer risk category at presentation as assessed by serum prostate specific antigen, cancer grade and tumor stage.Materials and Methods: We performed a retrospective cohort study of 5,939 patients enrolled in the CaPSURE™ national Disease Registry database between 1995 and 2007. Prostate cancer risk category was assigned as low, intermediate or high based on diagnostic prostate specific antigen, clinical grade and biopsy Gleason grade. Additionally, a group of men with low grade, limited volume tumors were identified as having clinically insignificant Disease. The primary outcome was prostate cancer risk category at presentation. Treatment received vs active surveillance was analyzed as a secondary end point.Results: Patients who were older, had lower levels of education and had Medicare with or without a supplement instead of private or Veteran's Affairs insurance were more likely to have intermediate and high risk Disease than low ri...
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Health related quality of life in patients treated with multimodal therapy for prostate cancer.
The Journal of urology, 2008Co-Authors: Matthew R. Cooperberg, Natalia Sadetsky, Peter R. CarrollAbstract:Purpose: Patients with prostate cancer and high risk Disease characteristics may benefit from multimodal therapy. However, the effects of multimodal therapy on health related quality of life have not been comprehensively described. We further characterized health related quality of life in patients treated with multimodal therapy.Materials and Methods: Patient data were obtained from the CaPSURE™ database, a national Disease Registry of men with prostate cancer. Included patients received active primary therapy (ie surgery or various forms of radiation) for prostate cancer with or without adjuvant or neoadjuvant therapy, and had complete clinical data, including health related quality of life assessments at baseline and through 2 years after treatment. The association between health related quality of life outcomes and different primary therapies with and without adjuvant or neoadjuvant therapy over time was analyzed using a repeated measures mixed model for each primary therapy.Results: A total of 2,204 ...
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Patterns of practice in the United States: Insights from CaPSURE on prostate cancer management
Current Prostate Reports, 2004Co-Authors: Matthew R. Cooperberg, Jeanette M. Broering, Mark S. Litwin, David M. Latini, Katrine L. Wallace, Peter R. CarrollAbstract:The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national Disease Registry of more than 10,000 patients with prostate cancer treated at 31 primarily community-based sites across the country. The database tracks oncologic and health-related quality-of-life outcomes. Because the urologists participating in the project treat according to their usual practices, CaPSURE facilitates the study of trends in Disease-management strategies, offering a reflection of "real world" practice patterns. This review highlights key studies during the past several years that document downward risk migration, validates widely used prognostic nomograms, establishes prostatespecific antigen doubling time as a surrogate endpoint for Disease-specific mortality, assesses the impact of treatment on patient-reported quality of life, and presents national trends in imaging test use and primary treatment strategies for localized Disease.
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THE CONTEMPORARY MANAGEMENT OF PROSTATE CANCER IN THE UNITED STATES: LESSONS FROM THE CANCER OF THE PROSTATE STRATEGIC UROLOGIC RESEARCH ENDEAVOR (CAPSURE), A NATIONAL Disease Registry
The Journal of urology, 2004Co-Authors: Matthew R. Cooperberg, Jeanette M. Broering, Mark S. Litwin, Deborah P. Lubeck, Shilpa S. Mehta, James M. Henning, Peter R. CarrollAbstract:Purpose: The epidemiology and treatment of prostate cancer have changed dramatically in the prostate specific antigen era. A large Disease Registry facilitates the longitudinal observation of trends in Disease presentation, management and outcomes. Materials and Methods: The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national Disease Registry of more than 10,000 men with prostate cancer accrued at 31 primarily community based sites across the United States. Demographic, clinical, quality of life and resource use variables are collected on each patient. We reviewed key findings from the data base in the last 8 years in the areas of Disease management trends, and oncological and quality of life outcomes. Results: Prostate cancer is increasingly diagnosed with low risk clinical characteristics. With time patients have become less likely to receive pretreatment imaging tests, less likely to pursue watchful waiting and more likely to receive brachytherapy or hormonal therapy. Relatively few patients treated with radical prostatectomy in the database are under graded or under staged before surgery, whereas the surgical margin rate is comparable to that in academic series. CaPSURE data confirm the usefulness of percent positive biopsies in risk assessment and they have further been used to validate multiple preoperative nomograms. CaPSURE results strongly affirm the necessity of patient reported quality of life assessment. Multiple studies have compared the quality of life impact of various treatment options, particularly in terms of urinary and sexual function, and bother. Conclusions: The presentation and management of prostate cancer have changed substantially in the last decade. CaPSURE will continue to track these trends as well as oncological and quality of life outcomes, and will continue to be an invaluable resource for the study of prostate cancer at the national level.
Matthew I. Bellgard - One of the best experts on this subject based on the ideXlab platform.
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The role of patient registries for rare genetic lipid disorders.
Current Opinion in Lipidology, 2018Co-Authors: David M. Ng, Matthew I. Bellgard, Amanda J. Hooper, John R. BurnettAbstract:Purpose of review We review the role, utility and current status of patient registries for rare genetic lipid disorders. Recent findings The creation and maintenance of rare genetic lipid disorder patient registries is critical for Disease monitoring, improving clinical best practice, facilitating research and enabling the development of novel therapeutics. An open-source Disease Registry platform, termed the Rare Disease Registry Framework, has been developed, optimized and deployed for homozygous familial hypercholesterolemia. A global Disease-specific Registry for lipoprotein lipase deficiency (LPLD), GENetherapy In the mAnagement of Lipoprotein Lipase deficiency, has been established with the aim of enrolling 20–40% of LPLD patients worldwide and will study the natural history of LPLD as well as therapeutic response to the gene therapy alipogene tiparvovec. Similarly, a Registry for lysosomal acid lipase deficiency patients in Europe and the United States is studying the clinical outcomes of the enzyme-replacement therapy sebelipase alfa. Summary There are currently few Disease-specific rare lipid disorder patient registries. The very nature of rare genetic lipid disorders would suggest that larger national or international registries are necessary to capture clinical data on a sufficient number of patients to provide insight into the prevalence and natural history of these conditions. Furthermore, these registries can help to identify and address deficiencies in current diagnostic and management practices, and facilitate clinical trials of new therapies.
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Design of a framework for the deployment of collaborative independent rare Disease-centric registries: Gaucher Disease Registry model
Blood Cells Molecules and Diseases, 2018Co-Authors: Matthew I. Bellgard, Jeffrey Szer, Sue Fletcher, Adam A. Hunter, N Zeps, Alan H. Bittles, Kathryn R. Napier, Jack GoldblattAbstract:Orphan drug clinical trials often are adversely affected by a lack of high quality treatment efficacy data that can be reliably compared across large patient cohorts derived from multiple governmental and country jurisdictions. It is critical that these patient data be captured with limited corporate involvement. For some time, there have been calls to develop collaborative, non-proprietary, patient-centric registries for post-market surveillance of aspects related to orphan drug efficacy. There is an urgent need for the development and sustainable deployment of these ‘independent’ registries that can capture comprehensive clinical, genetic and therapeutic information on patients with rare Diseases. We therefore extended an open-source Registry platform, the Rare Disease Registry Framework (RDRF) to establish an Independent Rare Disease Registry (IRDR). We engaged with an established rare Disease community for Gaucher Disease to determine system requirements, methods of data capture, consent, and reporting. A non-proprietary IRDR model is presented that can serve as autonomous data repository, but more importantly ensures that the relevant data can be made available to appropriate stakeholders in a secure, timely and efficient manner to improve clinical decision-making and the lives of those with a rare Disease.
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Towards Integrating NGS Workflows into Disease Registries
2014Co-Authors: Matthew I. Bellgard, Hugh Dawkins, Gareth Baynam, L. Render, John K. Mccooke, Michael Black, Paula Moolhuijzen, Roberto A. Barrero, Adam HunterAbstract:Disease registries capture relevant patient data including clinical and molecular information. These information-rich resources are the basis for new policies, prioritisation of investments and research development efforts by relevant health stakeholders. The challenge of having over 6,000 rare human conditions highlights the need for establishing a Rare Disease Registry Framework (RDRF). Previously, we implemented a RDRF to simplify the deployment of registries for selected high priority rare conditions. More recently, we have developed a second generation RDRF which enables user-driven dynamic creation of patient registries without the assistance of a software developer. Data elements (DE) and ontologies are utilised to capture appropriate patient information. Users can now dynamically create DE to tailor a particular Disease Registry. One of the key DE that the system can capture are the results of high throughput Next Generation Sequencing (NGS) applications such as variant calls (SNPs and indels) derived from the analysis of patient’s whole genome/exome data. NGS DE. The new RDRF addresses an important component of the RD translational Roadmap. The Yabi analytic workflow environment primarily enables seamless and transparent access to heterogeneous high performance computing resources (HPC, cloud) and bioinformatics workflows. Researchers are able to use a user-friendly web-based environment to drag-and-drop tools to create sophisticated workflows. Yabi enables collaboration, data sharing and reuse of analysis workflows within and between geographically distributed groups.
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Dispelling myths about rare Disease Registry system development
Source code for biology and medicine, 2013Co-Authors: Matthew I. Bellgard, Hugh Dawkins, Christophe Béroud, Kay Parkinson, Tess Harris, Ségolène Aymé, Gareth Baynam, Tarun Weeramanthri, Adam HunterAbstract:Rare Disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare Diseases. If designed appropriately, patient and Disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, registries possess a diverse range of functionality, operate in different, often-times incompatible, software environments and serve various, and sometimes incongruous, purposes. Given the ambitious goals of the International Rare Diseases Research Consortium (IRDiRC) by 2020 and beyond, RDRs must be designed with the agility to evolve and efficiently interoperate in an ever changing rare Disease landscape, as well as to cater for rapid changes in Information Communication Technologies. In this paper, we contend that RDR requirements will also evolve in response to a number of factors such as changing Disease definitions and diagnostic criteria, the requirement to integrate patient/Disease information from advances in either biotechnology and/or phenotypying approaches, as well as the need to adapt dynamically to security and privacy concerns. We dispel a number of myths in RDR development, outline key criteria for robust and sustainable RDR implementation and introduce the concept of a RDR Checklist to guide future RDR development.
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S.P.33 Australasian neuromuscular Disease Registry
Neuromuscular Disorders, 2012Co-Authors: E.l. Hammond, Matthew I. Bellgard, L. Youngs, Hugh DawkinsAbstract:Abstract Disease registries provide opportunity for clinical trials and improved service provision. The most effective registries are those designed in partnerships to operate within a harmonised global network. The Australasian Neuromuscular Disease Registry (ANMDR) has been created in collaboration with Treat–NMD, WA Health, the Centre of Comparative Genomics and clinical and patient stakeholder groups. The purpose of ANMDR is to serve the needs of the neuromuscular Disease community by (1) improving health service planning and (2) identifying patients for follow-up, on the basis of their demographic, clinical or genetic profile, who may benefit from access to emerging diagnostic tools or therapeutics. ANMDR houses specific Disease registries including muscular dystrophy, myotonic dystrophy, spinal muscular atrophy, with capacity to house registries for other specific Diseases in the future, such as fascioscapular humeral dystrophy and congenital muscular dystrophy. The Registry collects clinical data in a secure manner that allows interoperability with other registries. Upon approval by an independent Advisory Board, the Registry sends anonymised data to those registries and appropriate researchers. ANMDR is internet based and provides for the ability to control and restrict access to the information (as determined by the Registry Curator), and to interpret data outputs.The Registry enables participation in integrated and unified approaches for research in service provision and planning, information sharing, best practices, biobanking, harmonised data collection, analyses and reporting, and creating more robust ethical and legal frameworks. The ANMDR is one element of a larger plan to offer local opportunities to access globally consolidated shared resources, infrastructure and policy. Policy and planning to contextualise needs and identify opportunities of the ANMDR requires both local and international input.
Hugh Dawkins - One of the best experts on this subject based on the ideXlab platform.
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Towards Integrating NGS Workflows into Disease Registries
2014Co-Authors: Matthew I. Bellgard, Hugh Dawkins, Gareth Baynam, L. Render, John K. Mccooke, Michael Black, Paula Moolhuijzen, Roberto A. Barrero, Adam HunterAbstract:Disease registries capture relevant patient data including clinical and molecular information. These information-rich resources are the basis for new policies, prioritisation of investments and research development efforts by relevant health stakeholders. The challenge of having over 6,000 rare human conditions highlights the need for establishing a Rare Disease Registry Framework (RDRF). Previously, we implemented a RDRF to simplify the deployment of registries for selected high priority rare conditions. More recently, we have developed a second generation RDRF which enables user-driven dynamic creation of patient registries without the assistance of a software developer. Data elements (DE) and ontologies are utilised to capture appropriate patient information. Users can now dynamically create DE to tailor a particular Disease Registry. One of the key DE that the system can capture are the results of high throughput Next Generation Sequencing (NGS) applications such as variant calls (SNPs and indels) derived from the analysis of patient’s whole genome/exome data. NGS DE. The new RDRF addresses an important component of the RD translational Roadmap. The Yabi analytic workflow environment primarily enables seamless and transparent access to heterogeneous high performance computing resources (HPC, cloud) and bioinformatics workflows. Researchers are able to use a user-friendly web-based environment to drag-and-drop tools to create sophisticated workflows. Yabi enables collaboration, data sharing and reuse of analysis workflows within and between geographically distributed groups.
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Dispelling myths about rare Disease Registry system development
Source code for biology and medicine, 2013Co-Authors: Matthew I. Bellgard, Hugh Dawkins, Christophe Béroud, Kay Parkinson, Tess Harris, Ségolène Aymé, Gareth Baynam, Tarun Weeramanthri, Adam HunterAbstract:Rare Disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare Diseases. If designed appropriately, patient and Disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, registries possess a diverse range of functionality, operate in different, often-times incompatible, software environments and serve various, and sometimes incongruous, purposes. Given the ambitious goals of the International Rare Diseases Research Consortium (IRDiRC) by 2020 and beyond, RDRs must be designed with the agility to evolve and efficiently interoperate in an ever changing rare Disease landscape, as well as to cater for rapid changes in Information Communication Technologies. In this paper, we contend that RDR requirements will also evolve in response to a number of factors such as changing Disease definitions and diagnostic criteria, the requirement to integrate patient/Disease information from advances in either biotechnology and/or phenotypying approaches, as well as the need to adapt dynamically to security and privacy concerns. We dispel a number of myths in RDR development, outline key criteria for robust and sustainable RDR implementation and introduce the concept of a RDR Checklist to guide future RDR development.
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S.P.33 Australasian neuromuscular Disease Registry
Neuromuscular Disorders, 2012Co-Authors: E.l. Hammond, Matthew I. Bellgard, L. Youngs, Hugh DawkinsAbstract:Abstract Disease registries provide opportunity for clinical trials and improved service provision. The most effective registries are those designed in partnerships to operate within a harmonised global network. The Australasian Neuromuscular Disease Registry (ANMDR) has been created in collaboration with Treat–NMD, WA Health, the Centre of Comparative Genomics and clinical and patient stakeholder groups. The purpose of ANMDR is to serve the needs of the neuromuscular Disease community by (1) improving health service planning and (2) identifying patients for follow-up, on the basis of their demographic, clinical or genetic profile, who may benefit from access to emerging diagnostic tools or therapeutics. ANMDR houses specific Disease registries including muscular dystrophy, myotonic dystrophy, spinal muscular atrophy, with capacity to house registries for other specific Diseases in the future, such as fascioscapular humeral dystrophy and congenital muscular dystrophy. The Registry collects clinical data in a secure manner that allows interoperability with other registries. Upon approval by an independent Advisory Board, the Registry sends anonymised data to those registries and appropriate researchers. ANMDR is internet based and provides for the ability to control and restrict access to the information (as determined by the Registry Curator), and to interpret data outputs.The Registry enables participation in integrated and unified approaches for research in service provision and planning, information sharing, best practices, biobanking, harmonised data collection, analyses and reporting, and creating more robust ethical and legal frameworks. The ANMDR is one element of a larger plan to offer local opportunities to access globally consolidated shared resources, infrastructure and policy. Policy and planning to contextualise needs and identify opportunities of the ANMDR requires both local and international input.
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A modular approach to Disease Registry design: Successful adoption of an internet‐based rare Disease Registry
Human mutation, 2012Co-Authors: Matthew I. Bellgard, A. Macgregor, Fred Janon, Adam Harvey, Peter O'leary, Adam Hunter, Hugh DawkinsAbstract:There is a need to develop Internet-based rare Disease registries to support health care stakeholders to deliver improved quality patient outcomes. Such systems should be architected to enable multiple-level access by a range of user groups within a region or across regional/country borders in a secure and private way. However, this functionality is currently not available in many existing systems. A new approach to the design of an Internet-based architecture for Disease registries has been developed for patients with clinical and genetic data in geographical disparate locations. The system addresses issues of multiple-level access by key stakeholders, security and privacy. The system has been successfully adopted for specific rare Diseases in Australia and is open source. The results of this work demonstrate that it is feasible to design an open source Internet-based Disease Registry system in a scalable and customizable fashion and designed to facilitate interoperability with other systems.
Richard Roxburgh - One of the best experts on this subject based on the ideXlab platform.
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Establishment and 12-month progress of the New Zealand Motor Neurone Disease Registry.
Journal of clinical neuroscience : official journal of the Neurosurgical Society of Australasia, 2018Co-Authors: Kerry L. Walker, Miriam Rodrigues, Beth Watson, Claire Reilly, Emma L. Scotter, Heather Brunton, Janet Turnbull, Richard RoxburghAbstract:Abstract There are only limited treatments currently available for Motor Neurone Disease, each with modest benefits. However, there is a large amount of research and drug discovery currently underway worldwide. The New Zealand Motor Neurone Disease Registry was established in 2017 to facilitate participation in research and clinical trials, and to aid researchers in planning and recruitment. The NZ MND Registry is an opt in patient Registry which collects demographic, contact and clinical data for those who choose to enrol. We report anonymised aggregated data from the first year’s enrolment. 12th July 2018, there were 142 participants enrolled in the NZ MND Registry. Participant sex distribution reflects the demographics reported worldwide, but ethnicity is divergent from what is seen in New Zealand overall, with an over-representation of people who identify as New Zealand European. 85.5% of participants are diagnosed with sporadic MND and 6.1% with familial MND. The remainder were participants who have not been diagnosed but have a family history, or positive genetic test for a MND-causing mutation. Levels of disability are reported using ALSFRS-R scores, and show that the majority of participants are within the higher range of the scale. The Registry has facilitated entry of patients into three studies to date. The establishment of the NZ MND Registry illustrates a swift launch of a rare Disease patient Registry. The role of patient registries is an ever changing one, but with clear utility at every point of along the pathway to drug discovery.
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The New Zealand Neuromuscular Disease Registry: rate of diagnoses confirmed by molecular testing.
Journal of clinical neuroscience : official journal of the Neurosurgical Society of Australasia, 2014Co-Authors: Miriam Rodrigues, Alexa Kidd, Donald R. Love, Richard RoxburghAbstract:The New Zealand Neuromuscular Disease Registry (NZ NMD Registry) is part of the TREAT NMD Alliance, an international network that provides infrastructure ensuring the most promising new therapies reach neuromuscular patients as quickly as possible. Its main aim is to ensure that the most promising new therapies reach patients as quickly as possible. From the perspective of researchers interested in trialling treatments it is useful to have data on the pool of potential research participants. From a patient’s perspective it is important to know what trials they can take part in. Both of these require a confirmed molecular diagnosis in the patient. Some therapeutic strategies not only require knowledge of which gene is affected but are targeted at specific mutations within the gene. In reviewing data held in the NZ NMD Registry it was noted that, of those diagnosed with a genetic condition, only 51% have a confirmed molecular genetic diagnosis. This low rate of genetic diagnosis is a potential barrier to research participation but can be removed with improved genetic technology and with changes in knowledge about and attitudes towards genetic testing.
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S.P.37 The New Zealand Neuromuscular Disease Registry turns one – Data from the first year
Neuromuscular Disorders, 2012Co-Authors: Miriam Rodrigues, Rakesh Patel, Richard RoxburghAbstract:Abstract The New Zealand Neuromuscular Disease Registry was launched in September 2011. One year on we present data from participants recruited to the Registry in its first year of operation. Patient registries for rare Diseases have become increasingly recognised as an important step in facilitating research and propagating standards of care. The Muscular Dystrophy Association (MDA) of New Zealand, working in consort with interested clinicians and in collaboration with the Office for Population Health and Genomics in Western Australia has established the New Zealand Neuromuscular Disease Registry, which was launched in September 2011. Unlike many other registries in the rare Disease field the NZ Neuromuscular Disease Registry is not Disease-specific, instead it covers a range of both paediatric and adult neuromuscular disorders including the muscular dystrophies, spinal muscular atrophies, hereditary neuropathies, congenital myopathies, myasthenia, myotonic syndromes, metabolic myopathies, inherited ataxias and inflammatory myopathies. This has allowed us to efficiently obtain ethics committee approval for all these conditions with one application. The nation-wide Registry links into reputable international anonymised Disease-specific registries including the Global TREAT NMD databases for DMD and SMA and the data collected from each participant is dependent upon the neuromuscular condition they have and the requirements of the international Registry to which the NZ Registry is linked. In the case of participants who have conditions for which we have not identified an international database, the minimum data collected on each participant by the Registry is basic demographic information as well as confirmation of diagnosis by genetic test. Here we report on the full range of data collected including clinical and molecular information for the first year of the Registry.
Matthew R. Cooperberg - One of the best experts on this subject based on the ideXlab platform.
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The example of CaPSURE: lessons learned from a national Disease Registry
World journal of urology, 2011Co-Authors: Sima P. Porten, Matthew R. Cooperberg, Badrinath R. Konety, Peter R. CarrollAbstract:Introduction Although randomized controlled trials (RCTs) remain the gold standard for determining evidence-based clinical practices, large Disease registries that enroll large numbers of patients have become paramount as a relatively cost-effective additional tool.
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Health related quality of life in patients treated with multimodal therapy for prostate cancer.
The Journal of urology, 2008Co-Authors: Matthew R. Cooperberg, Natalia Sadetsky, Peter R. CarrollAbstract:Purpose: Patients with prostate cancer and high risk Disease characteristics may benefit from multimodal therapy. However, the effects of multimodal therapy on health related quality of life have not been comprehensively described. We further characterized health related quality of life in patients treated with multimodal therapy.Materials and Methods: Patient data were obtained from the CaPSURE™ database, a national Disease Registry of men with prostate cancer. Included patients received active primary therapy (ie surgery or various forms of radiation) for prostate cancer with or without adjuvant or neoadjuvant therapy, and had complete clinical data, including health related quality of life assessments at baseline and through 2 years after treatment. The association between health related quality of life outcomes and different primary therapies with and without adjuvant or neoadjuvant therapy over time was analyzed using a repeated measures mixed model for each primary therapy.Results: A total of 2,204 ...
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Patterns of practice in the United States: Insights from CaPSURE on prostate cancer management
Current Prostate Reports, 2004Co-Authors: Matthew R. Cooperberg, Jeanette M. Broering, Mark S. Litwin, David M. Latini, Katrine L. Wallace, Peter R. CarrollAbstract:The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national Disease Registry of more than 10,000 patients with prostate cancer treated at 31 primarily community-based sites across the country. The database tracks oncologic and health-related quality-of-life outcomes. Because the urologists participating in the project treat according to their usual practices, CaPSURE facilitates the study of trends in Disease-management strategies, offering a reflection of "real world" practice patterns. This review highlights key studies during the past several years that document downward risk migration, validates widely used prognostic nomograms, establishes prostatespecific antigen doubling time as a surrogate endpoint for Disease-specific mortality, assesses the impact of treatment on patient-reported quality of life, and presents national trends in imaging test use and primary treatment strategies for localized Disease.
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THE CONTEMPORARY MANAGEMENT OF PROSTATE CANCER IN THE UNITED STATES: LESSONS FROM THE CANCER OF THE PROSTATE STRATEGIC UROLOGIC RESEARCH ENDEAVOR (CAPSURE), A NATIONAL Disease Registry
The Journal of urology, 2004Co-Authors: Matthew R. Cooperberg, Jeanette M. Broering, Mark S. Litwin, Deborah P. Lubeck, Shilpa S. Mehta, James M. Henning, Peter R. CarrollAbstract:Purpose: The epidemiology and treatment of prostate cancer have changed dramatically in the prostate specific antigen era. A large Disease Registry facilitates the longitudinal observation of trends in Disease presentation, management and outcomes. Materials and Methods: The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national Disease Registry of more than 10,000 men with prostate cancer accrued at 31 primarily community based sites across the United States. Demographic, clinical, quality of life and resource use variables are collected on each patient. We reviewed key findings from the data base in the last 8 years in the areas of Disease management trends, and oncological and quality of life outcomes. Results: Prostate cancer is increasingly diagnosed with low risk clinical characteristics. With time patients have become less likely to receive pretreatment imaging tests, less likely to pursue watchful waiting and more likely to receive brachytherapy or hormonal therapy. Relatively few patients treated with radical prostatectomy in the database are under graded or under staged before surgery, whereas the surgical margin rate is comparable to that in academic series. CaPSURE data confirm the usefulness of percent positive biopsies in risk assessment and they have further been used to validate multiple preoperative nomograms. CaPSURE results strongly affirm the necessity of patient reported quality of life assessment. Multiple studies have compared the quality of life impact of various treatment options, particularly in terms of urinary and sexual function, and bother. Conclusions: The presentation and management of prostate cancer have changed substantially in the last decade. CaPSURE will continue to track these trends as well as oncological and quality of life outcomes, and will continue to be an invaluable resource for the study of prostate cancer at the national level.
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time trends in clinical risk stratification for prostate cancer implications for outcomes data from capsure
The Journal of Urology, 2003Co-Authors: Matthew R. Cooperberg, Deborah P. Lubeck, Shilpa S. Mehta, Peter R. CarrollAbstract:ABSTRACTPurpose: Many instruments designed to predict prostate cancer risk use a combination of clinical T stage, biopsy Gleason score and serum prostate specific antigen (PSA). We designed a study to characterize time trends in these parameters and their impact on patient risk stratification.Materials and Methods: Data were abstracted from CaPSURE (Cancer of the Prostate Strategic Urological Research Endeavor), a Disease Registry of 8,685 men with prostate cancer. The 6,260 men diagnosed since 1989 who had complete clinical information reported were categorized into low, intermediate or high risk groups based on established parameters for T stage, Gleason score and PSA.Results: Between 1989 to 1990 and 2001 to 2002 the proportion of patients presenting with high, intermediate and low risk Disease changed from 40.9%, 28.0% and 31.2% to 14.8%, 37.5% and 47.7%, respectively (p <0.0001). The incidence of T1 tumors increased from 16.7% to 48.5% and that of T3–4 tumors decreased from 11.8% to 3.5%, respectivel...