scholarly journals Development of a qualified clinical data registry for emergency medicine

2021 ◽  
Vol 2 (6) ◽  
Author(s):  
Stephen K. Epstein ◽  
Richard T. Griffey ◽  
Michelle P. Lin ◽  
James J. Augustine ◽  
Pawan Goyal ◽  
...  
Keyword(s):  
Emergency Medicine ◽  
Clinical Data ◽  
Data Registry

CDRGen: A Clinical Data Registry Generator (Formal and/or Technical Paper)

2021 ◽  
pp. 188-204
Author(s):  
Pedro Alves ◽  
Manuel J. Fonseca ◽  
João D. Pereira ◽  
Helena Galhardas
Keyword(s):  
Clinical Data ◽  
Technical Paper ◽  
Data Registry

scholarly journals The American College of Cardiology-National Cardiovascular Data Registry™ (ACC-NCDR™): building a national clinical data repository

2001 ◽  
Vol 37 (8) ◽  
pp. 2240-2245 ◽  
Author(s):  
Ralph G Brindis ◽  
Susan Fitzgerald ◽  
H.Vernon Anderson ◽  
Richard E Shaw ◽  
William S Weintraub ◽  
...  
Keyword(s):  
Clinical Data ◽  
Data Repository ◽  
Data Registry ◽  
Clinical Data Repository ◽  
National Cardiovascular

scholarly journals DescribePSP and ProPSP: German Multicenter Networks for Standardized Prospective Collection of Clinical Data, Imaging Data, and Biomaterials of Patients With Progressive Supranuclear Palsy

2021 ◽  
Vol 12 ◽  
Author(s):  
Gesine Respondek ◽  
Günter U. Höglinger
Keyword(s):  
Natural History ◽  
Neurodegenerative Diseases ◽  
Progressive Supranuclear Palsy ◽  
Clinical Diagnosis ◽  
Clinical Data ◽  
Treatment Strategies ◽  
Imaging Data ◽  
History Data ◽  
Data Registry ◽  
Richardson’S Syndrome

Background: The German research networks DescribePSP and ProPSP prospectively collect comprehensive clinical data, imaging data and biomaterials of patients with a clinical diagnosis of progressive supranuclear palsy. Progressive supranuclear palsy is a rare, adult-onset, neurodegenerative disease with striking clinical heterogeneity. Since now, prospective natural history data are largely lacking. Clinical research into treatment strategies has been limited due to delay in clinical diagnosis and lack of natural history data on distinct clinical phenotypes.Methods: The DescribePSP network is organized by the German Center for Neurodegenerative Diseases. DescribePSP is embedded in a larger network with parallel cohorts of other neurodegenerative diseases and healthy controls. The DescribePSP network is directly linked to other Describe cohorts with other primary diagnoses of the neurodegenerative and vascular disease spectrums and also to an autopsy program for clinico-pathological correlation. The ProPSP network is organized by the German Parkinson and Movement Disorders Society. Both networks follow the same core protocol for patient recruitment and collection of data, imaging and biomaterials. Both networks host a web-based data registry and a central biorepository. Inclusion/exclusion criteria follow the 2017 Movement Disorder Society criteria for the clinical diagnosis of progressive supranuclear palsy.Results: Both networks started recruitment of patients by the end of 2015. As of November 2020, N = 354 and 269 patients were recruited into the DescribePSP and the ProPSP studies, respectively, and N = 131 and 87 patients received at least one follow-up visit.Conclusions: The DescribePSP and ProPSP networks are ideal resources for comprehensive natural history data of PSP, including imaging data and biological samples. In contrast to previous natural history studies, DescribePSP and ProPSP include not only patients with Richardson's syndrome, but also variant PSP phenotypes as well as patients at very early disease stages, before a diagnosis of possible or probable PSP can be made. This will allow for identification and evaluation of early biomarkers for diagnosis, prognosis, and progression.

scholarly journals The Qualified Clinical Data Registry: A Pathway to Success within MACRA

2017 ◽  
Vol 38 (7) ◽  
pp. 1292-1296 ◽  
Author(s):  
M.M. Chen ◽  
A.B. Rosenkrantz ◽  
G.N. Nicola ◽  
E. Silva ◽  
G. McGinty ◽  
...  
Keyword(s):  
Clinical Data ◽  
Data Registry

Measuring quality of urology care using a qualified clinical data registry

2018 ◽  
Vol 28 (4) ◽  
pp. 329-335 ◽  
Author(s):  
Adam J. Gadzinski ◽  
Matthew R. Cooperberg
Keyword(s):  
Clinical Data ◽  
Data Registry

scholarly journals BIO FOr CARE: biomarkers of hypertrophic cardiomyopathy development and progression in carriers of Dutch founder truncating MYBPC3 variants—design and status

2021 ◽  
Author(s):  
M. Jansen ◽  
I. Christiaans ◽  
S. N. van der Crabben ◽  
M. Michels ◽  
R. Huurman ◽  
...  
Keyword(s):  
Hypertrophic Cardiomyopathy ◽  
Sudden Cardiac Death ◽  
Clinical Data ◽  
Cardiac Death ◽  
Primary Outcome ◽  
Predictive Biomarkers ◽  
Composite Endpoint ◽  
Blood Collection ◽  
Data Registry ◽  
Underlying Mechanisms

Abstract Background Hypertrophic cardiomyopathy (HCM) is the most prevalent monogenic heart disease, commonly caused by truncating variants in the MYBPC3 gene. HCM is an important cause of sudden cardiac death; however, overall prognosis is good and penetrance in genotype-positive individuals is incomplete. The underlying mechanisms are poorly understood and risk stratification remains limited. Aim To create a nationwide cohort of carriers of truncating MYBPC3 variants for identification of predictive biomarkers for HCM development and progression. Methods In the multicentre, observational BIO FOr CARe (Identification of BIOmarkers of hypertrophic cardiomyopathy development and progression in Dutch MYBPC3 FOunder variant CARriers) cohort, carriers of the c.2373dupG, c.2827C > T, c.2864_2865delCT and c.3776delA MYBPC3 variants are included and prospectively undergo longitudinal blood collection. Clinical data are collected from first presentation onwards. The primary outcome constitutes a composite endpoint of HCM progression (maximum wall thickness ≥ 20 mm, septal reduction therapy, heart failure occurrence, sustained ventricular arrhythmia and sudden cardiac death). Results So far, 250 subjects (median age 54.9 years (interquartile range 43.3, 66.6), 54.8% male) have been included. HCM was diagnosed in 169 subjects and dilated cardiomyopathy in 4. The primary outcome was met in 115 subjects. Blood samples were collected from 131 subjects. Conclusion BIO FOr CARe is a genetically homogeneous, phenotypically heterogeneous cohort incorporating a clinical data registry and longitudinal blood collection. This provides a unique opportunity to study biomarkers for HCM development and prognosis. The established infrastructure can be extended to study other genetic variants. Other centres are invited to join our consortium.

scholarly journals Posterior Cortical Atrophy: Characteristics From a Clinical Data Registry

2020 ◽  
Vol 11 ◽  
Author(s):  
Jennifer J. Olds ◽  
William L. Hills ◽  
Judith Warner ◽  
Julie Falardeau ◽  
Lori Haase Alasantro ◽  
...  
Keyword(s):  
Clinical Data ◽  
Cortical Atrophy ◽  
Posterior Cortical Atrophy ◽  
Data Registry

scholarly journals The National Neurosurgery Quality and Outcomes Database Qualified Clinical Data Registry: 2015 measure specifications and rationale

2015 ◽  
Vol 39 (6) ◽  
pp. E4 ◽  
Author(s):  
Scott L. Parker ◽  
Matthew J. McGirt ◽  
Kimon Bekelis ◽  
Christopher M. Holland ◽  
Jason Davies ◽  
...  
Keyword(s):  
Clinical Data ◽  
Health Care Quality ◽  
Quality Measurement ◽  
Quality Measures ◽  
Care Quality ◽  
Quality Reporting ◽  
Data Registry ◽  
National Quality ◽  
Quality And Outcomes ◽  
Reporting Programs

Meaningful quality measurement and public reporting have the potential to facilitate targeted outcome improvement, practice-based learning, shared decision making, and effective resource utilization. Recent developments in national quality reporting programs, such as the Centers for Medicare & Medicaid Services Qualified Clinical Data Registry (QCDR) reporting option, have enhanced the ability of specialty groups to develop relevant quality measures of the care they deliver. QCDRs will complete the collection and submission of Physician Quality Reporting System (PQRS) quality measures data on behalf of individual eligible professionals. The National Neurosurgery Quality and Outcomes Database (N2QOD) offers 21 non-PQRS measures, initially focused on spine procedures, which are the first specialty-specific measures for neurosurgery. Securing QCDR status for N2QOD is a tremendously important accomplishment for our specialty. This program will ensure that data collected through our registries and used for PQRS is meaningful for neurosurgeons, related spine care practitioners, their patients, and other stakeholders. The 2015 N2QOD QCDR is further evidence of neurosurgery’s commitment to substantively advancing the health care quality paradigm. The following manuscript outlines the measures now approved for use in the 2015 N2QOD QCDR. Measure specifications (measure type and descriptions, related measures, if any, as well as relevant National Quality Strategy domain[s]) along with rationale are provided for each measure.

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