English

Baseline and annually patient-reported Form

1 forms  
Administrative Data
Description

Administrative Data

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

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

Data type

integer

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

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.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
Please indicate highest level of schooling completed
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0013658
Which statement best describes your living arrangements?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C2184149
What is your relationship status?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0024819
Baseline clinical status
Description

Baseline clinical status

Alias
UMLS CUI-1
C0449440
UMLS CUI-2
C1442488
Have you been told by a doctor that you have any of the following? 0 = I have no other diseases
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0549184
Have you been told by a doctor that you have any of the following? 1 = Heart disease (For example, angina, heart attack, or heart failure)
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0018799
Have you been told by a doctor that you have any of the following? 2 = High blood pressure
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0020538
Have you been told by a doctor that you have any of the following? 3 = Leg pain when walking due to poor circulation
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1306889
Have you been told by a doctor that you have any of the following? 4 = Lung disease (For example, asthma, chronic bronchitis, or emphysema)
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0024115
Have you been told by a doctor that you have any of the following? 5 = Diabetes
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0011849
Have you been told by a doctor that you have any of the following? 6 = Kidney disease
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0022658
Have you been told by a doctor that you have any of the following? 7 = Liver disease
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0023895
Have you been told by a doctor that you have any of the following? 8 = Problems caused by stroke
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0038454
Have you been told by a doctor that you have any of the following? 9 = Disease of the nervous system (For example, multiple sclerosis)
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0027765
Have you been told by a doctor that you have any of the following? 10 = Other cancer (within the last 5 years)
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C1707251
Have you been told by a doctor that you have any of the following? 11 = Depression
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0011581
Have you been told by a doctor that you have any of the following? 12 = Arthritis
Description

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 ";")

Data type

boolean

Alias
UMLS CUI [1,1]
C0009488
UMLS CUI [1,2]
C0003864
Non-motor aspects of experiences of daily living
Description

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
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1, patient questionnaire)
Description

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)

Data type

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
Have you experienced any of the following in the last month?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0038990
UMLS CUI [1,2]
C0278092
Motor aspects of experiences of daily living
Description

Motor aspects of experiences of daily living

Alias
UMLS CUI-1
C0001288
UMLS CUI-2
C0426980
Motor aspects of experiences of daily living (MDS-UPDRS: Part II)
Description

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)

Data type

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
Overall health status
Description

Overall health status

Alias
UMLS CUI-1
C0424575
Is your Parkinson’s Disease limiting your ability to work?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C2984044
Have you been admitted to the hospital in the last 12 months?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0184666
UMLS CUI [1,2]
C4086728
How many times have you been admitted to a hospital in the last 12 months?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0184666
UMLS CUI [1,2]
C0750480
UMLS CUI [1,3]
C4086728
How many of these admissions were related to your Parkinson’s Disease?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0184666
UMLS CUI [1,2]
C0750480
UMLS CUI [1,3]
C4086728
UMLS CUI [1,4]
C0030567
PDQ8-Total score
Description

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)

Data type

float

Alias
UMLS CUI [1,1]
C2964552
UMLS CUI [1,2]
C0030567
UMLS CUI [1,3]
C0034394
Did you fall last year?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0085639
UMLS CUI [1,2]
C4086728
Did you suffer a bone fracture as a result?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0016658
UMLS CUI [1,2]
C0085639
UMLS CUI [1,3]
C4086728
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Similar models

Baseline and annually patient-reported Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
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
Demographic factors
C1704791 (UMLS CUI-1)
Item
Please indicate highest level of schooling completed
integer
C0013658 (UMLS CUI [1])
Educational level
Code List
Please indicate highest level of schooling completed
CL Item
None (0)
C0557286 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0557287 (UMLS CUI-1)
(Comment:en)
CL Item
Secondary (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Item
Which statement best describes your living arrangements?
integer
C2184149 (UMLS CUI [1])
Sex
Code List
Which statement best describes your living arrangements?
CL Item
I live with partner/spouse/family/friends (1)
C1443355 (UMLS CUI-1)
C2184147 (UMLS CUI-2)
C0557130 (UMLS CUI-3)
C0557128 (UMLS CUI-4)
(Comment:en)
CL Item
I live alone (2)
C0439044 (UMLS CUI-1)
(Comment:en)
CL Item
I live in a nursing home, hospital or other long term care home (3)
C0425205 (UMLS CUI-1)
C0557218 (UMLS CUI-2)
C3640869 (UMLS CUI-3)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
C2184149 (UMLS CUI-2)
(Comment:en)
Item
What is your relationship status?
integer
C0024819 (UMLS CUI [1])
Marital status
Code List
What is your relationship status?
CL Item
Never married/partnered (0)
C0027952 (UMLS CUI-1)
(Comment:en)
CL Item
Married/partnered (1)
C0555047 (UMLS CUI-1)
C0682323 (UMLS CUI-2)
(Comment:en)
CL Item
Divorced/separated (2)
C0682073 (UMLS CUI-1)
(Comment:en)
CL Item
Widowed (3)
C0206275 (UMLS CUI-1)
(Comment:en)
Item Group
Baseline clinical status
C0449440 (UMLS CUI-1)
C1442488 (UMLS CUI-2)
Comorbidities: None
Item
Have you been told by a doctor that you have any of the following? 0 = I have no other diseases
boolean
C0009488 (UMLS CUI [1,1])
C0549184 (UMLS CUI [1,2])
Comorbidities: Heart Disease
Item
Have you been told by a doctor that you have any of the following? 1 = Heart disease (For example, angina, heart attack, or heart failure)
boolean
C0009488 (UMLS CUI [1,1])
C0018799 (UMLS CUI [1,2])
Comorbidities: Hypertension
Item
Have you been told by a doctor that you have any of the following? 2 = High blood pressure
boolean
C0009488 (UMLS CUI [1,1])
C0020538 (UMLS CUI [1,2])
Comorbidities: Peripheral occlusive arterial disease
Item
Have you been told by a doctor that you have any of the following? 3 = Leg pain when walking due to poor circulation
boolean
C0009488 (UMLS CUI [1,1])
C1306889 (UMLS CUI [1,2])
Comorbidities: Lung disease
Item
Have you been told by a doctor that you have any of the following? 4 = Lung disease (For example, asthma, chronic bronchitis, or emphysema)
boolean
C0009488 (UMLS CUI [1,1])
C0024115 (UMLS CUI [1,2])
Comorbidities: Diabetes
Item
Have you been told by a doctor that you have any of the following? 5 = Diabetes
boolean
C0009488 (UMLS CUI [1,1])
C0011849 (UMLS CUI [1,2])
Comorbidities: Kidney Disease
Item
Have you been told by a doctor that you have any of the following? 6 = Kidney disease
boolean
C0009488 (UMLS CUI [1,1])
C0022658 (UMLS CUI [1,2])
Comorbidities: Liver disease
Item
Have you been told by a doctor that you have any of the following? 7 = Liver disease
boolean
C0009488 (UMLS CUI [1,1])
C0023895 (UMLS CUI [1,2])
Comorbidities: Stroke
Item
Have you been told by a doctor that you have any of the following? 8 = Problems caused by stroke
boolean
C0009488 (UMLS CUI [1,1])
C0038454 (UMLS CUI [1,2])
Comorbidities: Nervous system disease
Item
Have you been told by a doctor that you have any of the following? 9 = Disease of the nervous system (For example, multiple sclerosis)
boolean
C0009488 (UMLS CUI [1,1])
C0027765 (UMLS CUI [1,2])
Comorbidities: Other Cancer
Item
Have you been told by a doctor that you have any of the following? 10 = Other cancer (within the last 5 years)
boolean
C0009488 (UMLS CUI [1,1])
C1707251 (UMLS CUI [1,2])
Comorbidities: Depression
Item
Have you been told by a doctor that you have any of the following? 11 = Depression
boolean
C0009488 (UMLS CUI [1,1])
C0011581 (UMLS CUI [1,2])
Comorbidities: Arthritis
Item
Have you been told by a doctor that you have any of the following? 12 = Arthritis
boolean
C0009488 (UMLS CUI [1,1])
C0003864 (UMLS CUI [1,2])
Item Group
Non-motor aspects of experiences of daily living
C0001288 (UMLS CUI-1)
C1457887 (UMLS CUI-2)
C0332300 (UMLS CUI-3)
C0426980 (UMLS CUI-4)
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1, patient questionnaire)
Item
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1, patient questionnaire)
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])
Item
Have you experienced any of the following in the last month?
integer
C0038990 (UMLS CUI [1,1])
C0278092 (UMLS CUI [1,2])
Sexual function/sweating
Code List
Have you experienced any of the following in the last month?
CL Item
Feeling less interested in sex or more interested in sex (1)
C3898951 (UMLS CUI-1)
C3842908 (UMLS CUI-2)
(Comment:en)
CL Item
Finding it difficult to have sex when you try (2)
C0549622 (UMLS CUI-1)
(Comment:en)
CL Item
Excessive sweating (3)
C0700590 (UMLS CUI-1)
(Comment:en)
Item Group
Motor aspects of experiences of daily living
C0001288 (UMLS CUI-1)
C0426980 (UMLS CUI-2)
Motor aspects of experiences of daily living (MDS-UPDRS: Part II)
Item
Motor aspects of experiences of daily living (MDS-UPDRS: Part II)
integer
C3639714 (UMLS CUI [1,1])
C0728938 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
C0001288 (UMLS CUI [2,1])
C0426980 (UMLS CUI [2,2])
Item Group
Overall health status
C0424575 (UMLS CUI-1)
Item
Is your Parkinson’s Disease limiting your ability to work?
integer
C2984044 (UMLS CUI [1])
Ability to work
Code List
Is your Parkinson’s Disease limiting your ability to work?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Have you been admitted to the hospital in the last 12 months?
integer
C0184666 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Ability to work
Code List
Have you been admitted to the hospital in the last 12 months?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Number of admissions
Item
How many times have you been admitted to a hospital in the last 12 months?
integer
C0184666 (UMLS CUI [1,1])
C0750480 (UMLS CUI [1,2])
C4086728 (UMLS CUI [1,3])
Admissions due to Parkinson's
Item
How many of these admissions were related to your Parkinson’s Disease?
integer
C0184666 (UMLS CUI [1,1])
C0750480 (UMLS CUI [1,2])
C4086728 (UMLS CUI [1,3])
C0030567 (UMLS CUI [1,4])
PDQ8-Total score
Item
PDQ8-Total score
float
C2964552 (UMLS CUI [1,1])
C0030567 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
Item
Did you fall last year?
integer
C0085639 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Ability to work
Code List
Did you fall last year?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Did you suffer a bone fracture as a result?
integer
C0016658 (UMLS CUI [1,1])
C0085639 (UMLS CUI [1,2])
C4086728 (UMLS CUI [1,3])
Ability to work
Code List
Did you suffer a bone fracture as a result?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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