71 Challenges to the Standardization of Trauma Data Collection: A Call for Common Data Elements for Acute and Long-Term Trauma Databases

2018 ◽  
Vol 39 (suppl_1) ◽  
pp. S40-S41
Author(s):  
L C Simko ◽  
L A Chen ◽  
R Friedman ◽  
D Amtmann ◽  
K Kowalske ◽  
...  
Keyword(s):  
Data Collection ◽  
Common Data Elements ◽  
Data Elements

scholarly journals Measuring What Matters Across International Long-Term Care Settings

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 160-160
Author(s):  
Kirsten Corazzini ◽  
Michael Lepore
Keyword(s):  
Long Term Care ◽  
Assessment Tool ◽  
Term Care ◽  
Common Data Elements ◽  
Person Centered Care ◽  
Care Assessment ◽  
Centered Care ◽  
Data Elements ◽  
What Matters

Abstract Measuring what matters most to residents, relatives and staff in residential long-term care settings is critical, yet underdeveloped in our predominantly frailty and deficits-focused measurement frameworks. The Worldwide Elements to Harmonize Research in Long-Term Care Living Environments (WE-THRIVE) consortium has previously prioritized measurement concepts in the areas of care outcomes, workforce and staffing, person-centered care, and care context. These concepts include knowing the resident and what matters most to the resident, and outcomes such as quality of life, and personhood. We present findings of our currently recommended measures, including both general population and dementia-specific measures, such as the Person-Centered Care Assessment Tool (PCAT), the Personhood in Dementia Questionnaire (PDQ), and the ICEpop CAPability Measure for Older People (ICECAP-O). We also describe remaining gaps in existing measures that will need to be addressed to fully specify common data elements focused on measuring what matters most to residents, relatives and staff.

scholarly journals Laying Down the Groundwork for an International Measurement Infrastructure

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 145-145
Author(s):  
Katherine McGilton ◽  
Franziska Zuniga ◽  
Michael Lepore ◽  
Kirsten Corazzini ◽  
Charlene Chu
Keyword(s):  
Staff Training ◽  
Staff Retention ◽  
Policy And Practice ◽  
Term Care ◽  
Common Data Elements ◽  
Supervisor Effectiveness ◽  
Data Elements ◽  
Measurement Infrastructure ◽  
International Measurement

Abstract The COVID-19 epidemic has brought to light the significant problems in the long-term care (LTC) sector, specifically the lack of an infrastructure to collect and aggregate data between LTC sectors in different countries. This talk will briefly describe goals of the WE-THRIVE initiative, and focus on exploring the development of “workforce and staffing” common data elements for LTC. We will describe how the subgroup is “laying down the groundwork” within this domain with various methodologies to develop CDEs related to workforce and staffing. The CDEs aim to measure staff retention and turnover, evaluating nursing supervisor effectiveness, and staff training in LTC. Anticipated challenges of this international work will also be highlighted. International research on LTC can valuably inform LTC policy and practice, and the proposed CDEs can facilitate data sharing and aggregation internationally, including low-, middle-, and high-income countries.

scholarly journals Toward Common Data Elements for International Research in Long-term Care Homes: Advancing Person-Centered Care

2019 ◽  
Vol 20 (5) ◽  
pp. 598-603 ◽  
Author(s):  
Kirsten N. Corazzini ◽  
Ruth A. Anderson ◽  
Barbara J. Bowers ◽  
Charlene H. Chu ◽  
David Edvardsson ◽  
...  
Keyword(s):  
International Research ◽  
Long Term Care ◽  
Care Homes ◽  
Term Care ◽  
Common Data Elements ◽  
Person Centered Care ◽  
Centered Care ◽  
Data Elements

Abstract WP203: National Institute of Neurological Disorders and Stroke Common Data Elements: Public Review and Updates to the Stroke Recommendations

Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Katelyn Gay ◽  
Damon Collie ◽  
Muniza Sheikh ◽  
Joy Esterlitz ◽  
Jeffrey Saver ◽  
...  
Keyword(s):  
Data Collection ◽  
Clinical Research ◽  
Neurological Disorders ◽  
Vital Signs ◽  
Cerebral Aneurysms ◽  
Research Data ◽  
Common Data Element ◽  
Common Data Elements ◽  
Stroke Research ◽  
Data Elements

Objective: The National Institute of Neurological Disorders and Stroke (NINDS) initiated the Common Data Element (CDE) project to provide standardized clinical research data collection formats that increase the efficiency and effectiveness of studies and reduce start-up time, as well as improve data quality and facilitate and accelerate data sharing. In 2010, Stroke-specific CDEs were posted on the NINDS CDE website. The Stroke Oversight Committee (OC) reviewed Core CDEs in 2015; and in 2018, recommended that Stroke CDEs undergo a comprehensive review and update to Version 2.0. Background: In August 2018, a Stroke V2.0 Working Group (WG) consisting of over 50 worldwide subject matter experts was convened by NINDS. The WG was asked to review all current Stroke CDEs and subarachnoid hemorrhage and unruptured cerebral aneurysms (SAH) CDEs (developed in 2017) for harmonization and inclusion within Stroke V2.0. Methods: The Stroke V2.0 WG divided into eight domain-specific subgroups: Biospecimens, Biomarkers, and Laboratory Tests; Hospital Course and Acute Therapies; Imaging; Long Term Therapies; Medical History and Prior Health Status; Outcomes and Endpoints; Stroke Presentation and Vital Signs; and Stroke Types and Subtypes. Subgroups met regularly to review, revise and add to the existing Stroke CDEs based on developments in stroke research. Following an internal WG review, a public review of the draft updates will be held. The WG will consider public feedback before V2.0 is finalized. The Stroke OC plans to review the project status at the 2020 International Stroke Conference. Results: The Stroke V2.0 CDE recommendations will include updated and new template case report forms, data dictionaries, instrument informational documents and guideline documents. The updates will reflect the current state of science, streamline CDE recommendations, and incorporate SAH CDEs. Stroke V2.0 CDEs will be available on the NINDS CDE website in 2020. Conclusions: The NINDS CDEs are periodically revised as research progresses. Through the update of the Stroke CDEs to V2.0, the initiative strives to maintain the utility of CDEs as a valuable clinical research resource. NINDS encourages use of CDEs to standardize research data collection across studies.

scholarly journals Common data elements for preclinical epilepsy research: Standards for data collection and reporting. A TASK3 report of the AES/ILAE Translational Task Force of the ILAE

Epilepsia ◽  
2017 ◽  
Vol 58 ◽  
pp. 78-86 ◽  
Author(s):  
Lauren C. Harte-Hargrove ◽  
Jacqueline A. French ◽  
Asla Pitkänen ◽  
Aristea S. Galanopoulou ◽  
Vicky Whittemore ◽  
...  
Keyword(s):  
Data Collection ◽  
Task Force ◽  
Common Data Elements ◽  
Epilepsy Research ◽  
Data Elements ◽  
Research Standards

scholarly journals A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

2014 ◽  
Vol 22 (1) ◽  
pp. 76-85 ◽  
Author(s):  
Rémy Choquet ◽  
Meriem Maaroufi ◽  
Albane de Carrara ◽  
Claude Messiaen ◽  
Emmanuel Luigi ◽  
...  
Keyword(s):  
Data Collection ◽  
Rare Disease ◽  
Rare Diseases ◽  
Care Coordination ◽  
Minimum Data Set ◽  
National Plan ◽  
Data Set ◽  
Common Data Elements ◽  
Minimum Data ◽  
Data Elements

Abstract Background Although rare disease patients make up approximately 6–8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the necessity for better care coordination and epidemiology for rare diseases. A clinical data standard for normalization and exchange of rare disease patient data was proposed. The original methodology used to build the French national minimum data set (F-MDS-RD) common to the 131 expert rare disease centers is presented. Methods To encourage consensus at a national level for homogeneous data collection at the point of care for rare disease patients, we first identified four national expert groups. We reviewed the scientific literature for rare disease common data elements (CDEs) in order to build the first version of the F-MDS-RD. The French rare disease expert centers validated the data elements (DEs). The resulting F-MDS-RD was reviewed and approved by the National Plan Strategic Committee. It was then represented in an HL7 electronic format to maximize interoperability with electronic health records. Results The F-MDS-RD is composed of 58 DEs in six categories: patient, family history, encounter, condition, medication, and questionnaire. It is HL7 compatible and can use various ontologies for diagnosis or sign encoding. The F-MDS-RD was aligned with other CDE initiatives for rare diseases, thus facilitating potential interconnections between rare disease registries. Conclusions The French F-MDS-RD was defined through national consensus. It can foster better care coordination and facilitate determining rare disease patients’ eligibility for research studies, trials, or cohorts. Since other countries will need to develop their own standards for rare disease data collection, they might benefit from the methods presented here.

The TRACK-TBI Approach: Redefining Severity and Outcome Assessments

Neurotrauma ◽  
2018 ◽  
pp. 81-100
Author(s):  
John K. Yue ◽  
Ethan A. Winkler ◽  
Hansen Deng ◽  
Amy J. Markowitz ◽  
Kevin K. W. Wang ◽  
...  
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Pilot Study ◽  
Data Collection ◽  
Large Scale ◽  
Diagnostic Tools ◽  
Common Data Elements ◽  
Diagnostic Approaches ◽  
Prospective Trials ◽  
Data Elements

Advances in traumatic brain injury (TBI) research have been limited by imprecise classification and diagnostic approaches and insensitive outcome measures. The National Institute of Neurological Disorders and Stroke TBI Common Data Elements (CDEs) project aimed to standardize data collection across TBI research, discover new diagnostic tools, and develop a multidimensional outcomes endpoint sensitive to differential profiles of recovery. Progress from implementing the TBI CDEs is described via the Transforming Research and Clinical Knowledge in Traumatic Brain Injury Pilot (TRACK-TBI Pilot) study. Refinements to the TBI CDEs are incorporated into several ongoing large-scale prospective trials comprising a comprehensive, harmonized dataset capable of refining severity markers and outcome endpoints.

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