ID

40537

Beschrijving

PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 2017 www.ichom.org Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. Conditions Covered: Idiopathic Parkinson’s Disease Treatment Approaches: Pharmacotherapy | Behavioral Therapy | Exercise-Based Therapy | Deep Brain Stimulation | Infusion/Injection-Based Delivery This ODM-file contains clinical variables to be administered at baseline and annually from then on. Surveys used: Movement Disorder Society (MDS-UPDRS), Part I: Non-Motor Aspects of Experiences of Daily Living (nM- EDL). Both clinical- and patient-reported portions; Part II: Motor Aspects of Experiences of Daily Living (M-EDL). Patient-reported: The MDS-UPDRS requires a license (by International Parkinson’s and Movement Disorders Society), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. International Parkinson’s and Movement Disorders Society (IPMDS) Non-motor symptoms questionnaire (NMSQ): The NMSQ requires a license. However, in ICHOM's Parkinson's Disease Standard Set only one question derived from 2 NMSQ items is used. Parkinson’s Disease Quality of Life Questionnaire (PDQ-8): The PDQ-8 requires a license (by Innovation, Oxford University), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. ICHOM was supported for this standard set by the International Association for Parkinsonism and Related Disorders. Publication: De Roos P, Bloem BR, Kelley TA, et al. A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement. Journal of Parkinson’s disease. 2017;7(3):533-543. doi:10.3233/JPD-161055. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

www.ichom.org

Trefwoorden

Versies (3)
  1. 04-09-18 04-09-18 - Sarah Riepenhausen
  2. 04-09-18 04-09-18 - Sarah Riepenhausen
  3. 30-04-20 30-04-20 - Sarah Riepenhausen
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30 april 2020

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Creative Commons BY-NC 4.0
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ICHOM Parkinson's Disease

Engels

Baseline and annual Clinical Form

1 Formulieren  
Administrative Data
Beschrijving

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Beschrijving

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Datatype

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
Beschrijving

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc.

Datatype

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Cognitive and psychiatric functioning
Beschrijving

Cognitive and psychiatric functioning

Alias
UMLS CUI-1
C0392335
UMLS CUI-2
C0233402
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
Beschrijving

This item is a partial score of items of MDS-UPDRS about non-motor functioning (1.1-1.6). Due to the need for a license for use of the original scale, the items are not part of this version of the standard set. In the original standard set the item-IDs are from MDSUPDRS_Q01 to MDSUPDRS_Q06. INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Clinical TYPE (original questions): Single answer (this version: numerical)

Datatype

integer

Alias
UMLS CUI [1,1]
C3639714
UMLS CUI [1,2]
C0728938
UMLS CUI [1,3]
C0449820
UMLS CUI [2,1]
C0001288
UMLS CUI [2,2]
C1457887
UMLS CUI [2,3]
C0332300
UMLS CUI [2,4]
C0426980
UMLS CUI [3]
C0392335
UMLS CUI [4]
C0233402
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Similar models

Baseline and annual Clinical Form

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Cognitive and psychiatric functioning
C0392335 (UMLS CUI-1)
C0233402 (UMLS CUI-2)
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
Item
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
integer
C3639714 (UMLS CUI [1,1])
C0728938 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
C0001288 (UMLS CUI [2,1])
C1457887 (UMLS CUI [2,2])
C0332300 (UMLS CUI [2,3])
C0426980 (UMLS CUI [2,4])
C0392335 (UMLS CUI [3])
C0233402 (UMLS CUI [4])
Terug naar het begin van de pagina 

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