1
40
2
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.03.006</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Pediatric; Cohort study; Data management; Pallative care
Creator
An entity primarily responsible for making the resource
Nye RT; Hill DL; Carroll KW; Boyden JY; Katcoff H; Griffis H; Campos D; Hall M; Wolfe J; Feudtner C
Description
An account of the resource
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. METHODS: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. CONCLUSIONS: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.03.006</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Boyden JY
Campos D
Carroll KW
cohort study
Data Management
Feudtner C
Griffis H
Hall M
Hill DL
Journal of Pain and Symptom Management
Katcoff H
Nye RT
Pallative care
Pediatric
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.03.006</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Cohort Studies; Data Management; Medical Record Linkage; Multicenter Study; Palliative Care
Creator
An entity primarily responsible for making the resource
Nye RT; Hill DL; Carroll KW; Boyden JY; Katcoff H; Griffis H; Campos D; Hall M; Wolfe J; Feudtner C
Description
An account of the resource
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's SHAred Data and REsearch (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. Methods. The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at 7 children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. Conclusions. Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.03.006</a>
2022
Boyden JY
Campos D
Carroll KW
Cohort Studies
Data Management
Feudtner C
Griffis H
Hall M
Hill DL
Journal of Pain and Symptom Management
Katcoff H
May 2022 List
Medical Record Linkage
Multicenter Study
Nye RT
Palliative Care
Wolfe J