ID

31562

Beschreibung

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 clinical 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

www.ichom.org

Stichworte

Versionen (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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ICHOM

Hochgeladen am

4. September 2018

DOI

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Creative Commons BY-NC 3.0
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ICHOM Parkinson's Disease

Englisch

Baseline and annual Clinical Form

1 Formulare  
Administrative Data
Beschreibung

Administrative Data

Alias
UMLS CUI-1
C1320722 (Administrative documentation)
SNOMED
405624007
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 (Patient identification)
SNOMED
372039005
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 (Relative time)
SNOMED
118578006
LOINC
LP21276-8
UMLS CUI [1,2]
C1442488 (Baseline)
LOINC
LA16758-7
Cognitive and psychiatric functioning
Beschreibung

Cognitive and psychiatric functioning

Alias
UMLS CUI-1
C0392335 (Cognitive functions)
SNOMED
311465003
UMLS CUI-2
C0233402 (Psychiatric function, NOS)
Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
Beschreibung

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)

Datentyp

integer

Alias
UMLS CUI [1,1]
C3639714 (Movement Disorder Society Unified Parkinson's Disease Rating Scale Questionnaire)
UMLS CUI [1,2]
C0728938 (Partial)
SNOMED
255609007
LOINC
LA6660-0
UMLS CUI [1,3]
C0449820 (Score)
SNOMED
246262008
LOINC
MTHU024701
UMLS CUI [2,1]
C0001288 (Activities of Daily Living (activity))
SNOMED
129025006
LOINC
LP57620-4
UMLS CUI [2,2]
C1457887 (Symptoms)
LOINC
MTHU021540
UMLS CUI [2,3]
C0332300 (Except for)
SNOMED
5185003
UMLS CUI [2,4]
C0426980 (Motor symptoms)
SNOMED
267082004
UMLS CUI [3]
C0392335 (Cognitive functions)
SNOMED
311465003
UMLS CUI [4]
C0233402 (Psychiatric function, NOS)
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Ähnliche Modelle

Baseline and annual Clinical Form

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
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])
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