ID

31559

Beskrivning

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 a form to be administered at the first visit to the doctor with Parkinson's disease. Mainly Patient-reported, some items may alternatively have a clinical reporting source. 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.

Länk

www.ichom.org

Nyckelord

Versioner (2)
  1. 2018-09-04 2018-09-04 - Sarah Riepenhausen
  2. 2020-04-30 2020-04-30 - Sarah Riepenhausen
Rättsinnehavare

ICHOM

Uppladdad den

4 september 2018

DOI

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Creative Commons BY-NC 3.0
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ICHOM Parkinson's Disease

Engelsk

First Doctor's Visit Form

1 Formulär  
Patient ID
Beskrivning

Patient ID

Alias
UMLS CUI-1
C1269815
Indicate the patient's medical record number
Beskrivning

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

Datatyp

integer

Alias
UMLS CUI [1]
C1269815
Demographic factors
Beskrivning

Demographic factors

Alias
UMLS CUI-1
C1704791
What is your date of birth?
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Clinical or patient-reported TYPE: Date by DD/MM/YYYY

Datatyp

date

Måttenheter
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0001779
UMLS CUI [2]
C0421451
DD/MM/YYYY
Please indicate your sex at birth
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Clinical or patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0079399
Baseline clinical status
Beskrivning

Baseline clinical status

Alias
UMLS CUI-1
C0449440
UMLS CUI-2
C1442488
Did your doctor ever diagnose you with depression prior to your Parkinson's Disease diagnosis?
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C0011581
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0030567
Did your doctor ever diagnose you with anxiety prior to your Parkinson’s Disease diagnosis?
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C0003467
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0030567
Before you were diagnosed with Parkinson’s Disease, had you ever been told, or suspected yourself, that you seem to “act out your dreams” while asleep (for example, punching, flailing your arms in the air, making running movements etc.)?
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C0751772
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0030567
At what age was your Parkinson’s Disease diagnosed?
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Numerical RESPONSE OPTIONS: Numerical value of age in years

Datatyp

integer

Måttenheter
  • a
Alias
UMLS CUI [1,1]
C1828181
UMLS CUI [1,2]
C0030567
a
At what age did your Parkinson’s Disease motor symptoms (e.g., rigidity, tremor, slowness of movement) start?
Beskrivning

INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Numerical RESPONSE OPTIONS: Numerical value of age in years

Datatyp

integer

Måttenheter
  • a
Alias
UMLS CUI [1,1]
C0150907
UMLS CUI [1,2]
C0030567
a
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Similar models

First Doctor's Visit Form

1 Formulär
Name
Typ
Description | Question | Decode (Coded Value)
Datatyp
Alias
Item Group
Patient ID
C1269815 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Age
Item
What is your date of birth?
date
C0001779 (UMLS CUI [1])
C0421451 (UMLS CUI [2])
Item
Please indicate your sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Please indicate your sex at birth
CL Item
Male (1)
C0086582 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item Group
Baseline clinical status
C0449440 (UMLS CUI-1)
C1442488 (UMLS CUI-2)
Item
Did your doctor ever diagnose you with depression prior to your Parkinson's Disease diagnosis?
integer
C0011581 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0030567 (UMLS CUI [1,3])
Depression before PD diagnosis
Code List
Did your doctor ever diagnose you with depression prior to your Parkinson's Disease diagnosis?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Did your doctor ever diagnose you with anxiety prior to your Parkinson’s Disease diagnosis?
integer
C0003467 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0030567 (UMLS CUI [1,3])
Depression before PD diagnosis
Code List
Did your doctor ever diagnose you with anxiety prior to your Parkinson’s Disease diagnosis?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Before you were diagnosed with Parkinson’s Disease, had you ever been told, or suspected yourself, that you seem to “act out your dreams” while asleep (for example, punching, flailing your arms in the air, making running movements etc.)?
integer
C0751772 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0030567 (UMLS CUI [1,3])
Depression before PD diagnosis
Code List
Before you were diagnosed with Parkinson’s Disease, had you ever been told, or suspected yourself, that you seem to “act out your dreams” while asleep (for example, punching, flailing your arms in the air, making running movements etc.)?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Age at PD diagnosis
Item
At what age was your Parkinson’s Disease diagnosed?
integer
C1828181 (UMLS CUI [1,1])
C0030567 (UMLS CUI [1,2])
Age at PD onset
Item
At what age did your Parkinson’s Disease motor symptoms (e.g., rigidity, tremor, slowness of movement) start?
integer
C0150907 (UMLS CUI [1,1])
C0030567 (UMLS CUI [1,2])
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