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

- 20/06/18 - 1 modulo, 7 itemgroups, 61 elementi, 1 linguaggio

Itemgroups: 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 modulo, 5 itemgroups, 28 elementi, 2 lingue

Itemgroups: Diagnosis Multiple Sclerosis, EDSS, Current Therapy MS, Previous Therapy MS, MRI Multiple Sclerosis

Multiple Sclerosis Core Data Set First Draft

Neuroinflammatory demyelinating diseases CNS Common Data Elements

- 17/09/21 - 1 modulo, 13 itemgroups, 46 elementi, 2 lingue

Itemgroups: 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.

HICDEP - Basic follow-up/visit related data (tblVIS)

- 29/01/18 - 26 moduli, 4 itemgroups, 19 elementi, 1 linguaggio

Itemgroups: Basic follow-up/visit related data, Additional questions for adolescents and adults, Additional questions for children and infants, Additional questions for infants

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.