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Neuroinflammatory demyelinating diseases CNS Common Data Elements

- 17-09-21 - 1 Formulier, 13 Itemgroepen, 46 Data-elementen, 2 Talen
Itemgroepen: Diagnosis Demyelinating disease of central nervous system, MS, NMOSD, Acute disseminated encephalomyelitis (ADEM), CSF, Current relapse, Previous relapses, EDSS, Current therapy, Risk stratification Natalizumab, Previous Therapy, MRI Results, Other medical information
Common Data Elements for Neuroinflammatory Demyelinating Diseases of the central nervous system (NID CDEs). The NID CDEs may be used in clinical routine, clinical trial and registry documentation of Multiple Sclerosis (MS), Neuromyelitis Optica Spectrum Disorders (NMOSD) and Acute Disseminated Encephalomyelitis (ADEM). The NID CDEs were developed by the Institute of Medical Informatics of the University Muenster in cooperation with the Department of Neurology of the University Hospital Muenster.

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

- 20-09-21 - 13 Formulieren, 3 Itemgroepen, 11 Data-elementen, 1 Taal
Itemgroepen: 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 Itemgroepen 14 Data-elementen

Administrative/Demographic Details

1 Itemgroep 11 Data-elementen

Medical History

3 Itemgroepen 9 Data-elementen

Lab: Cytology/Cytogenetics/Cytochemistry

1 Itemgroep 29 Data-elementen

Lab: Immunophenotyping

1 Itemgroep 17 Data-elementen

Lab: Molecular Genetics

1 Itemgroep 27 Data-elementen

MS CDE Diagnosis and Disease Characteristics Multiple Sclerosis - Diagnosis and Disease Characteristics

- 20-06-18 - 1 Formulier, 7 Itemgroepen, 61 Data-elementen, 1 Taal
Itemgroepen: Diagnosis; Disease Characteristics, Clinical Course MS, Clinical Course NMO, Clinical Course ADEM, Other Clinical Course, Diagnostic critera MS, Medical history disease onset
MS Common Data Elements, Multiple Sclerosis Diagnosis and Disease Characteristics for semantic analysis 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.

Multiple Sclerosis Core Data Set

- 02-12-16 - 1 Formulier, 5 Itemgroepen, 28 Data-elementen, 2 Talen
Itemgroepen: Diagnosis Multiple Sclerosis, EDSS, Current Therapy MS, Previous Therapy MS, MRI Multiple Sclerosis
Multiple Sclerosis Core Data Set First Draft

HICDEP - Obstetrical problems during pregnancy (tblPREG_OBS)

- 29-01-18 - 26 Formulieren, 1 Itemgroep, 5 Data-elementen, 1 Taal
Itemgroep: Obstetrical problems during pregnancy
HICDEP stands for HIV Cohorts Data Exchange Protocol. The HIV Cohorts Data Exchange Protocol (HICDEP) is a protocol that allows for simple sharing of data from HIV cohorts by providing a standard format for datasets. It is used by several major HIV Cohort Collaborations such as CASCADE, COHERE, EuroSIDA, PENTA, EPPICC ART-CC and D:A:D. Its first version was presented at the 7th International Workshop on HIV Observational Databases in March 29–30, 2003, Fiuggi, Italy, and a summary was published in Antiviral Therapy. The specification currently consists of 27 tables in a relational structure which cover most medical aspects of HIV patient histories used in clinical research, including pediatric aspects. Subform Descriptions: -tblCEP - Clinical Events and Procedures: holds type and date of adverse events including serious non-AIDS conditions -tblART- Antiretroviral treatment: holds type of antiretroviral drug, start and stop dates and reason for stopping -tblBAS - Basic clinical, background and demographic information: holds basic information such as demographics, basic clinical information, date of AIDS diagnosis, death and drop-out information -tblDELIVERY_CHILD - Delivery information related to the child(ren): This table holds information about a delivery specific to a child. Mother-specific data is kept in tblDELIVERY_MUM. -tblDELIVERY_MUM - Delivery information related to the mother: This table contains information about the delivery specific to the mother. Child-specific information is recorded in tblDELIVERY_CHILD instead. -tblDIS - Opportunistic infections: holds type and date of CDC-C diseases. -tblLAB - Laboratory values: holds type, date, value and unit of laboratory tests -tblLAB_BP - Laboratory values - Blood pressure: holds date, diastolic and systolic values and unit of blood pressure measurements. -tblLAB_CD4 - Laboratory values: holds date and value of CD4 measurements. -tblLAB_RNA - Laboratory values: holds date, value, detection limit and type of viral assay. -tblLAB_RES - Resistance testing: holds background information on the resistance test, laboratory, library, kit, software and type of test -tblLAB_RES_LVL_1 - Nucleotide sequences (PRO, RT, GP41, GP120): holds nucleoside sequence for the PRO and RT sequences. No entry is made if the test was a phenotype test. -tblLAB_RES_LVL_2 - Mutations: holds mutations and positions of PRO and RT sequences. -tblLAB_RES_LVL_3 - Resistance test result: holds resistance result in relation to antiretroviral drug. tblLAB_VIRO - Laboratory values - viro-/serology: holds test results for viro-/serological tests (hepatitis etc.) -tblLTFU - Death and drop-out: holds data in death and drop-out -tblMED - Other medication: holds type, start and stop dates for other medication/treatments. -tblNEWBORN - Newborn: holds information related to newborns -tblNEWBORN_ABNORM - Abnormalities: Abnormalities in newborns are recorded here, one abnormality per row. The absence of a record is to be interpreted as "unknown whether the abnormality existed" since most cohorts only record positive events. -tblOVERLAP - Cross-cohort identification: holds information on the patient's participation in other cohorts -tblPREG - Pregnancy: holds general pregnancy-related information -tblPREG_OBS - Obstetrical problems during pregnancy: This table describes problems during a pregnancy. Abnormalities in newborns are recorded in tblNEWBORN_ABNORM instead. -tblPREG_OUT - Pregnancy outcome: This table describes outcomes of pregnancies described in tblPREG. -tblREFILL - Prescription refill data: holds drug, refill date and supply of prescriptions -tblSAMPLES - Blood Samples: This table contains information on the storage of blood, urine and other samples stored in a laboratory. -tblVIS - Basic follow-up/visit related data: holds visit related information such as weight, wasting, smoking, occupational status etc.

Abnormalities (tblNEWBORN_ABNORM)

1 Itemgroep 3 Data-elementen

Laboratory values - viro-/serology (tblLAB_VIRO)

1 Itemgroep 9 Data-elementen

Cross-cohort identification (tblOVERLAP)

1 Itemgroep 4 Data-elementen

Prescription refill data (tblREFILL)

1 Itemgroep 4 Data-elementen

Pregnancy outcome (tblPREG_OUT)

1 Itemgroep 8 Data-elementen

Blood Samples (tblSAMPLES)

1 Itemgroep 13 Data-elementen

LEL Cohen’s Scale - LEL LIFE EVENTS CHECKLIST

- 01-10-20 - 1 Formulier, 1 Itemgroep, 72 Data-elementen, 1 Taal
Itemgroep: life events
ODM form of Dr. Cohen's Scales. The form contains questions about a number of events that commonly happen in people's lives. More information: https://www.cmu.edu/dietrich/psychology/stress-immunity-disease-lab/scales/index.html Forms originally derived from http://www.psy.cmu.edu/~scohen/scales.html Source article: Cohen, S., Tyrrell, D. A. J., & Smith, A. P. (1991). Psychological stress and susceptibility to the common cold. New England Journal of Medicine, 325, 606-612. Related articles: Cohen, S., & Williamson, G. (1991). Stress and infectious disease in humans. Psychological Bulletin,109, 5-24. Cohen, S., Tyrrell, D. A. J., & Smith, A. P. (1993). Negative life events, perceived stress, negative affect and susceptibility to the common cold. Journal of Personality and Social Psychology, 64, 131-140.

PSP Cohen’s Scale - Parent Social Participation (PSP) Measure

- 28-11-17 - 1 Formulier, 1 Itemgroep, 5 Data-elementen, 1 Taal
Itemgroep: Leisure Activities
ODM form of Dr. Cohen's Scales. This scale is made up of a list of activities, which parents may have been involved in during the child's childhood and adolescence. Forms derived from http://www.psy.cmu.edu/~scohen/scales.html

CHIPS Cohen’s Scale - COHEN-HOBERMAN INVENTORY of PHYSICAL SYMPTOMS (CHIPS)

- 23-11-17 - 1 Formulier, 1 Itemgroep, 33 Data-elementen, 1 Taal
Itemgroep: How Much Does It Bother You
ODM form of Dr. Cohen's Scales.The CHIPS is a list if 33 common physical symptoms. Items were carefully selected so as to exclude symptoms of an obviously psychological nature (e.g., felt nervous or depressed). Forms derived from http://www.psy.cmu.edu/~scohen/scales.html. Information to scoring at http://www.psy.cmu.edu/~scohen/CHIPSscore.html

ISEL College Cohen’s Scale - ISEL College INTERPERSONAL SUPPORT EVALUATION LIST

- 02-10-17 - 1 Formulier, 4 Itemgroepen, 48 Data-elementen, 3 Talen
Itemgroepen: Tangible assets, Belonging, Appraisal, Self-Esteem
ODM form of Dr. Cohen's Scales. The ISEL was designed to measure perceptions of social support among individuals in the general population. Forms derived from http://www.psy.cmu.edu/~scohen/scales.html Information to the scale at http://www.psy.cmu.edu/~scohen/ISEL-Cscore.html Polish version: Translation by Dr. Danuta Zarzycka, Medical University of Lublin. Reference: Danuta Zarzycka, Bożena Śpila, Irena Wrońska, Marta Makara-Studzińska (2010). Analiza walidacyjna wybranych aspektów Skali Oceny Wsparcia Społecznego — Interpersonal Support Evaluation List — 40 v. General Population (ISEL-40 v. GP) [Validation analysis of selected aspects of Interpersonal Support Evaluation List— 40 v. General Population (ISEL-40 v. GP)]. Psychiatria, tom 7, nr 3, 83–94. Greek version: Translation by Evagelia Delistamatis, Ms. Maria Samakouri, & Dr. Miltos Livaditis. Reference: Delistamati E, Samakouri MA, Davis EA, Vorvolakos T, Xenitidis K, Livaditis M. (2006). Interpersonal Support Evaluation List (ISEL)--college version: Validation and application in a Greek sample. International Journal of Social Psychiatry, 52(6): 552-560.

SNI Cohen’s Scale - Social Network Index

- 13-08-17 - 1 Formulier, 2 Itemgroepen, 23 Data-elementen, 2 Talen
Itemgroepen: Social Network, Group member
ODM form of Dr. Cohen's Scales. The form measures Number of High-Contact Roles (Network Diversity), Number of People in Social Network and Number of Embedded Networks. The Scoring of the Social Network Index Form is according to the link http://www.psy.cmu.edu/~scohen/SNIscore.html. Forms derived from http://www.psy.cmu.edu/~scohen/scales.html Portuguese translation by Eunice Costa.

Interpersonal Support Evaluation List (ISEL) -- General Population

- 13-08-17 - 1 Formulier, 1 Itemgroep, 40 Data-elementen, 8 Talen
Itemgroep: Interpersonal Perception; evaluation/testing
ODM form of Dr. Cohen's Scales. The ISEL consists of a list of 40 statements concerning the perceived availability of potential social resources. Forms derived from http://www.psy.cmu.edu/~scohen/scales.html. Information to scoring at http://www.psy.cmu.edu/~scohen/ISELscore.html. Permission to use Greek version granted by Marios Adonis, University of Nicosia, Cyprus. Permission to use Serbian version granted by Biljana Jaredic. Permission to use Danish version granted by Drs. Rune Andersen and Kate Andreasson, Region Zealand, Psychiatric Research Unit, Denmark. Dutch translation by Jo Renty & Herbert Roeyers, Ghent University, Belgium. Japanese translation by Naomi Ueyama, Kansai University of Nursing and Health Science. Polish tranlsation by Dr. Danuta Zarzycka, Skubiszewski Medical Uniwersity. Spanish translation by Eduardo Remor, Universidad Autónoma de Madrid. Swedish translation by Dr. Bruno Hagglof, University of Umeå.

PIQ Cohen’s Scale - PIQ Partner Interaction Questionnaire

- 20-04-17 - 1 Formulier, 2 Itemgroepen, 20 Data-elementen, 1 Taal
Itemgroepen: Negative Behaviors, Behaviors Positive
ODM form of Dr. Cohen's Scales. The PIQ inquires about the support for quitting provided by a spouse or living partner. PIQ contains 20-items including 10 positive and 10 negative behaviors a partner might perform. Forms derived from http://www.psy.cmu.edu/~scohen/scales.html

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