ID
31563
Beschrijving
PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 2017 www.ichom.org 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 patient-reported variables to be administered at baseline and annually from then on. 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. TEST StudyFor example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey 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 endorsed for this standard set by the International Association for Parkinsonism and Related Disorders. 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.
Link
Trefwoorden
Versies (3)
- 04-09-18 04-09-18 - Sarah Riepenhausen
- 04-09-18 04-09-18 - Sarah Riepenhausen
- 30-04-20 30-04-20 - Sarah Riepenhausen
Houder van rechten
ICHOM
Geüploaded op
4 september 2018
DOI
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Licentie
Creative Commons BY-NC 3.0
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ICHOM Parkinson's Disease
Baseline and annually patient-reported Form
- StudyEvent: ODM
Beschrijving
Demographic factors
Alias
- UMLS CUI-1
- C1704791
Beschrijving
The level of schooling is defined in each country as per ISCED [International Standard Classification] INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1]
- C0013658
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1]
- C2184149
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1]
- C0024819
Beschrijving
Baseline clinical status
Alias
- UMLS CUI-1
- C0449440
- UMLS CUI-2
- C1442488
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0549184
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0018799
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0020538
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C1306889
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0024115
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0011849
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0022658
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0023895
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0038454
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0027765
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C1707251
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0011581
Beschrijving
Based upon the Self-administered Comorbidity Questionnaire (Sangha et al, 2003) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Multiple answer (Originally: Separate multiple entries with ";")
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009488
- UMLS CUI [1,2]
- C0003864
Beschrijving
Non-motor aspects of experiences of daily living
Alias
- UMLS CUI-1
- C0001288
- UMLS CUI-2
- C1457887
- UMLS CUI-3
- C0332300
- UMLS CUI-4
- C0426980
Beschrijving
This item is a partial score of patient-reported items of MDS-UPDRS about non-motor functioning (1.7-1.13). 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_Q07 to MDSUPDRS_Q13. INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported 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
Beschrijving
Derived from the Non-motor symptoms questionnaire (NMSQ) by the International Parkinson’s and Movement Disorders Society (IPMDS) INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0038990
- UMLS CUI [1,2]
- C0278092
Beschrijving
Motor aspects of experiences of daily living
Alias
- UMLS CUI-1
- C0001288
- UMLS CUI-2
- C0426980
Beschrijving
This item is a partial score of patient-reported items of MDS-UPDRS about motor functioning in daily life (2.1-2.13). 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_Q21 to MDSUPDRS_Q33. INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported 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]
- C0426980
Beschrijving
Overall health status
Alias
- UMLS CUI-1
- C0424575
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1]
- C2984044
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0184666
- UMLS CUI [1,2]
- C4086728
Beschrijving
INCLUSION CRITERIA: All patients, If answered 'yes' to admissions (ADMIS) TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Numerical value RESPONSE OPTIONS: number of admissions
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0184666
- UMLS CUI [1,2]
- C0750480
- UMLS CUI [1,3]
- C4086728
Beschrijving
INCLUSION CRITERIA: All patients, If answered 'yes' to admissions (ADMIS) TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Numerical value RESPONSE OPTIONS: Number of admissions related to Parkinson's Disease
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0184666
- UMLS CUI [1,2]
- C0750480
- UMLS CUI [1,3]
- C4086728
- UMLS CUI [1,4]
- C0030567
Beschrijving
Due to the need for a license, the PDQ-8 questions are not part of this version of the standard set. In the original standard set version the separate items of the questionnaire have the IDs PDQ8_Q01 to PDQ8_Q08. INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE (original items): Single answer (this version: numerical)
Datatype
float
Alias
- UMLS CUI [1,1]
- C2964552
- UMLS CUI [1,2]
- C0030567
- UMLS CUI [1,3]
- C0034394
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0085639
- UMLS CUI [1,2]
- C4086728
Beschrijving
INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0016658
- UMLS CUI [1,2]
- C0085639
- UMLS CUI [1,3]
- C4086728
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Baseline and annually patient-reported Form
- StudyEvent: ODM
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