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NINDS CDE Demographics Multiple Sclerosis - Demographics

- 15/03/2021 - 1 Formulaire, 1 Groupe Item, 8 Eléments de données, 1 Langue
Groupe Item: Demographics
NINDS Common Data Elements, Multiple Sclerosis Demographics Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

26672_Common Data Elements Myeloid Leukemia (MDS AML CML) - Global Disease Course

- 20/09/2021 - 13 Formulaires, 3 Groupes Item, 11 Eléments de données, 1 Langue
Groupes Item: Global Disease Course, Red Cell Transfusion, Platelet Cell Transfusion
Common Data Elements Myeloid Leukemia (MDS, AML, CML) for use in clinical routine and clinical trial documentation. https://www.ncbi.nlm.nih.gov/pubmed/27577388

Physical Examination/Follow up

3 Groupes Item 14 Eléments de données

Administrative/Demographic Details

1 Groupe Item 11 Eléments de données

Medical History

3 Groupes Item 9 Eléments de données

Lab: Cytology/Cytogenetics/Cytochemistry

1 Groupe Item 29 Eléments de données

Lab: Immunophenotyping

1 Groupe Item 17 Eléments de données

Lab: Molecular Genetics

1 Groupe Item 27 Eléments de données

Acute Myeloid Leukemia - Treatment Details

- 20/09/2021 - 13 Formulaires, 6 Groupes Item, 39 Eléments de données, 1 Langue
Groupes Item: Therapeutic procedure; Details, Adverse Event, Hemopoietic stem cell transplant, Platelet Engraftment, Neutrophil Engraftment, Therapeutic procedure; Status
Acute Myeloid Leukemia Common Data Elements Holz

Medical History

6 Groupes Item 20 Eléments de données

Lab: Cytology/Cytogenetics/Cytochemistry

3 Groupes Item 43 Eléments de données

Lab: Molecular Genetics, Immunophenotyping, Cytogenetics

1 Groupe Item 1 Élément de données

Physical Examination/Follow-up

4 Groupes Item 27 Eléments de données

Lab: Infectiology

1 Groupe Item 11 Eléments de données

Lab: Molecular Genetics

1 Groupe Item 23 Eléments de données

NINDS CDE Participant/Subject Characteristics Epilepsy - Demographics and Social Status

- 28/04/2016 - 1 Formulaire, 2 Groupes Item, 16 Eléments de données, 1 Langue
Groupes Item: Demographics, Social Status
NINDS Common Data Elements (Participant/Subject Characteristics Epilepsy) Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Participant/Subject Characteristics Friedreich's Ataxia - Demographics and Social Status

- 28/04/2016 - 1 Formulaire, 2 Groupes Item, 25 Eléments de données, 1 Langue
Groupes Item: Demographics, Social Status
NINDS Common Data Elements (Participant/Subject Characteristics Friedreich's Ataxia) Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Participant/Subject Characteristics Amyotrophic Lateral Sclerosis - Demographics and Social Status

- 18/12/2015 - 1 Formulaire, 2 Groupes Item, 9 Eléments de données, 1 Langue
Groupes Item: Demographics, Social Status
NINDS Common Data Elements [Participant/Subject Characteristics] [Amyotrophic Lateral Sclerosis] Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Participant/Subject Characteristics Headache - Demographics and Social Status

- 04/05/2016 - 1 Formulaire, 2 Groupes Item, 58 Eléments de données, 1 Langue
Groupes Item: Demographics, Social Status
NINDS Common Data Elements (Participant/Subject Characteristics; Headache) Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

EHR4CR CTE Data Inventory

- 21/04/2018 - 1 Formulaire, 14 Groupes Item, 133 Eléments de données, 1 Langue
Groupes Item: Adverse Events, Concomitant Medication, Demographics, Disease Characteristics, Disposition, ECG, Laboratory, Laboratory Data, Medical History, Patient Reported Outcome, Substance Use, Surgery, Tumor Response, Vital Signs
Data Inventory for Clinical Trial Execution in the EHR4CR project. https://www.ncbi.nlm.nih.gov/pubmed/27875988 DOI for citation: 10.21961/MDM:17994

CDASH Demographics - Demographics

- 20/09/2021 - 1 Formulaire, 1 Groupe Item, 9 Eléments de données, 2 Langues
Groupe Item: Demographics
modified from http://www.cdisc.org

CDASH Subject Characteristics

- 20/06/2018 - 1 Formulaire, 1 Groupe Item, 5 Eléments de données, 2 Langues
Groupe Item: Subject Characteristics
modified from http://www.cdisc.org

CDASH Subject Characteristics - CDASH LAB (Scenario 2)

- 20/06/2018 - 1 Formulaire, 16 Groupes Item, 95 Eléments de données, 1 Langue
Groupes Item: LAB Information, CBC LAB Results – Leukocytes, CBC LAB Results – Neutrophils, CBC LAB Results – Lymphocytes, CBC LAB Results – Monocytes, CBC LAB Results – Eosinophils, CBC LAB Results – Basophils, CBC LAB Results – Erythrocytes, CBC LAB Results – Hemoglobin, CBC LAB Results – Hematocrit, CBC LAB Results - Platelet Count, CBC LAB Results - Ery. Mean Corpuscular Volume, CBC LAB Results - Mean Platelet Volume, CBC LAB Results - Ery. Mean Corpuscular Hemoglobin, CBC LAB Results - Ery. Mean Corpuscular HB Concentration, CBC LAB Results - Erythrocytes Distribution Width
modified from http://www.cdisc.org

PCORnet Common Data Model (CDM) Demographic

- 30/03/2020 - 1 Formulaire, 1 Groupe Item, 11 Eléments de données, 1 Langue
Groupe Item: Demographic
PCORnet Common Data Model (CDM) Demographic PCORnet Common Data Model (CDM) A patient-centered approach to building an agile research platform is at the heart of PCORnet, and data serves as the backbone. Considering the large number and diverse types of organizations that are part of PCORnet, we all benefit from having a streamlined, efficient way to use the data produced by these organizations. Enter the PCORnet Common Data Model. The Common Data Model (or CDM) is a way of organizing data into a standard structure. The approach PCORnet is using to do this mirrors the approaches used by other large national research consortia. Each PCORnet partner network maps data to the same consistent format (i.e., with the same variable name, attributes, and other metadata). By undertaking this step, we create a platform that enables much more rapid responses to research-related questions. Contrast this with having to transform and prepare data each time we want to ask a new research question, and the efficiencies become clear. The PCORnet CDM is based on the FDA Sentinel Initiative Common Data Model (www.sentinelsystem.org) and has been informed by other distributed initiatives such as the Health Care Systems Research Network, the Vaccine Safety Datalink, various AHRQ Distributed Research Network projects, and the ONC Standards & Interoperability Framework Query Health Initiative. The PCORnet CDM leverages standard terminologies and coding systems for healthcare (including ICD, SNOMED, CPT, HCPSC, and LOINC) to enable interoperability with and responsiveness to evolving data standards. The PCORnet CDM (like other parts of PCORnet) will grow and evolve. Version 1.0 focused on a set of data items that are frequently available. Subsequent versions build in additional data elements which are analytically important for patient-centered outcomes research and feasible to standardize across sites.

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