ID

40535

Beschreibung

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 clinically reported Treatment variables to be administered annually. 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

Stichworte

Versionen (2)
  1. 04.09.18 04.09.18 - Sarah Riepenhausen
  2. 30.04.20 30.04.20 - Sarah Riepenhausen
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30. April 2020

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ICHOM Parkinson's Disease

Englisch

Annual Clinical Form: Treatment variables

1 Formulare  
Administrative Data
Beschreibung

Administrative Data

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

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

Datentyp

integer

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

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.

Datentyp

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Treatment Variables
Beschreibung

Treatment Variables

Alias
UMLS CUI-1
C0087111
Indicate if the patient received medical therapy during the last 12 months
Beschreibung

INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C0418981
UMLS CUI [1,2]
C4086728
Indicate if the patient received behavioral therapy during the last 12 months
Beschreibung

INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C0004933
UMLS CUI [1,2]
C4086728
Indicate if the patient received exercise-based therapy during the last 12 months
Beschreibung

INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C2243091
UMLS CUI [1,2]
C4086728
Indicate if the patient received deep brain stimulation during the last 12 months
Beschreibung

INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C0394162
UMLS CUI [1,2]
C4086728
Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
Beschreibung

INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C0574032
UMLS CUI [1,2]
C0087111
UMLS CUI [1,3]
C4086728
UMLS CUI [2,1]
C1533685
UMLS CUI [2,2]
C0087111
UMLS CUI [2,3]
C4086728
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Ähnliche Modelle

Annual Clinical Form: Treatment variables

1 Formulare
Name
Typ
Description | Question | Decode (Coded Value)
Datentyp
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
Treatment Variables
C0087111 (UMLS CUI-1)
Item
Indicate if the patient received medical therapy during the last 12 months
integer
C0418981 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Treatments received over the last 12 months: Medical therapy
Code List
Indicate if the patient received medical therapy during the last 12 months
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient received behavioral therapy during the last 12 months
integer
C0004933 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Treatments received over the last 12 months: Medical therapy
Code List
Indicate if the patient received behavioral therapy during the last 12 months
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient received exercise-based therapy during the last 12 months
integer
C2243091 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Treatments received over the last 12 months: Medical therapy
Code List
Indicate if the patient received exercise-based therapy during the last 12 months
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient received deep brain stimulation during the last 12 months
integer
C0394162 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Treatments received over the last 12 months: Medical therapy
Code List
Indicate if the patient received deep brain stimulation during the last 12 months
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
integer
C0574032 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
C4086728 (UMLS CUI [1,3])
C1533685 (UMLS CUI [2,1])
C0087111 (UMLS CUI [2,2])
C4086728 (UMLS CUI [2,3])
Treatments received over the last 12 months: Medical therapy
Code List
Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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