ID

14875

Beschrijving

NINDS Common Data Elements (Medical history of Friedreich´s Ataxia) Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

Link

https://www.commondataelements.ninds.nih.gov/

Trefwoorden

Versies (1)
  1. 03-05-16 03-05-16 -
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3 mei 2016

DOI

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Creative Commons BY-NC 3.0
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NINDS CDE Medical History of Friedreich´s Ataxia

Engels

Medical History of Friedreich´s Ataxia

1 Formulieren  
Special medical history
Beschrijving

Special medical history

Study ID
Beschrijving

Study ID

Datatype

text

Alias
UMLS CUI [1]
C2826693
Study site name
Beschrijving

Study site

Datatype

text

Alias
UMLS CUI [1]
C2825164
Subject ID
Beschrijving

Subject ID

Datatype

text

Alias
UMLS CUI [1]
C2348585
Age at Symptom Onset
Beschrijving

Age at Onset

Datatype

integer

Maateenheden
  • yrs
Alias
UMLS CUI [1]
C0150907
yrs
Age of diagnosis
Beschrijving

Age of diagnosis

Datatype

integer

Maateenheden
  • yrs
Alias
UMLS CUI [1]
C1828181
yrs
First symptom experienced by the patient
Beschrijving

First symptoms

Datatype

integer

Alias
UMLS CUI [1,1]
C0205435
UMLS CUI [1,2]
C1457887
First symptoms: please specify other
Beschrijving

First symptoms

Datatype

text

Alias
UMLS CUI [1,1]
C0205435
UMLS CUI [1,2]
C1457887
Problems during neonatal period?
Beschrijving

Problems during neonatal period

Datatype

boolean

Alias
UMLS CUI [1,1]
C0935562
UMLS CUI [1,2]
C0033213
Problems during neonatal period:if yes, please specify
Beschrijving

Problems during neonatal period

Datatype

text

Alias
UMLS CUI [1,1]
C0935562
UMLS CUI [1,2]
C0033213
Impaired physical abilities during infancy
Beschrijving

Impaired physical abilities

Datatype

boolean

Alias
UMLS CUI [1,1]
C0231171
UMLS CUI [1,2]
C0231330
Delayed motor milestones
Beschrijving

Motor delay

Datatype

boolean

Alias
UMLS CUI [1]
C1854301
Delayed motor milestones : if yes, please specify
Beschrijving

Motor delay

Datatype

text

Alias
UMLS CUI [1]
C1854301
Was genetic diagnosis established?
Beschrijving

Genetic diagnosis

Datatype

boolean

Alias
UMLS CUI [1]
C0596612
If genetic diagnosis was established, confirmed by
Beschrijving

Select all that apply

Datatype

integer

Alias
UMLS CUI [1]
C0596612
When was genetic diagnosis established?
Beschrijving

YYYY

Datatype

integer

Maateenheden
  • year
Alias
UMLS CUI [1]
C0596612
year
Where was genetic diagnosis established? Please give name,city and country of clinical laboratory that performed genetic testing
Beschrijving

Genetic diagnosis

Datatype

text

Alias
UMLS CUI [1]
C0596612
Result of genetic testing
Beschrijving

Length of each GAA repeat on each allele; if the patient has a point mutation, provide the exact mutation Allele 1 GAA repeats Allele 2 GAA repeats Point mutation (if applicable, position and amino acid change)

Datatype

text

Alias
UMLS CUI [1]
C0596612
Was patient diagnosed with scoliosis?
Beschrijving

Scoliosis

Datatype

integer

Alias
UMLS CUI [1]
C0036439
Scoliosis:If yes, please indicate degree of maximum curvature
Beschrijving

Scoliosis

Datatype

integer

Alias
UMLS CUI [1]
C0036439
Scoliosis:If yes, please indicate location of maximum curvature
Beschrijving

Scoliosis

Datatype

integer

Alias
UMLS CUI [1]
C0036439
Scoliosis: If yes, indicate date of last assessment
Beschrijving

Scoliosis

Datatype

date

Alias
UMLS CUI [1]
C0036439
Scoliosis:If yes, please indicate if the participant has had surgery
Beschrijving

Scoliosis

Datatype

integer

Alias
UMLS CUI [1]
C0036439
Was participants vision affected?
Beschrijving

Vision impairment

Datatype

integer

Alias
UMLS CUI [1]
C1456582
Was participants hearing affected?
Beschrijving

Hearing impairment

Datatype

integer

Alias
UMLS CUI [1]
C1384666
Was participants speech affected?
Beschrijving

Speech impairment

Datatype

integer

Alias
UMLS CUI [1]
C0233715
Did the participant have foot surgery?
Beschrijving

Foot surgery

Datatype

integer

Alias
UMLS CUI [1]
C0188413
Was participants ambulation status affected?
Beschrijving

Ambulation

Datatype

integer

Alias
UMLS CUI [1]
C0080331
Does the participant use an assistive walking device?
Beschrijving

Assistive walking device

Datatype

integer

Alias
UMLS CUI [1]
C3874140
Assistive walking device: if yes, please indicate age when participant required assistance with walking
Beschrijving

Age needing assistive walking device

Datatype

integer

Maateenheden
  • yrs
Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C3874140
yrs
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Similar models

Medical History of Friedreich´s Ataxia

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
Special medical history
Study ID
Item
Study ID
text
C2826693 (UMLS CUI [1])
Study site
Item
Study site name
text
C2825164 (UMLS CUI [1])
Subject ID
Item
Subject ID
text
C2348585 (UMLS CUI [1])
Age at Onset
Item
Age at Symptom Onset
integer
C0150907 (UMLS CUI [1])
Age of diagnosis
Item
Age of diagnosis
integer
C1828181 (UMLS CUI [1])
Item
First symptom experienced by the patient
integer
C0205435 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
First symptoms
Code List
First symptom experienced by the patient
CL Item
Scoliosis (1)
CL Item
Cardiomyopathy (2)
CL Item
Diabetes (3)
CL Item
Instability (4)
CL Item
Falls (5)
CL Item
Other, specify (6)
First symptoms
Item
First symptoms: please specify other
text
C0205435 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
Problems during neonatal period
Item
Problems during neonatal period?
boolean
C0935562 (UMLS CUI [1,1])
C0033213 (UMLS CUI [1,2])
Problems during neonatal period
Item
Problems during neonatal period:if yes, please specify
text
C0935562 (UMLS CUI [1,1])
C0033213 (UMLS CUI [1,2])
Impaired physical abilities
Item
Impaired physical abilities during infancy
boolean
C0231171 (UMLS CUI [1,1])
C0231330 (UMLS CUI [1,2])
Motor delay
Item
Delayed motor milestones
boolean
C1854301 (UMLS CUI [1])
Motor delay
Item
Delayed motor milestones : if yes, please specify
text
C1854301 (UMLS CUI [1])
Genetic diagnosis
Item
Was genetic diagnosis established?
boolean
C0596612 (UMLS CUI [1])
Item
If genetic diagnosis was established, confirmed by
integer
C0596612 (UMLS CUI [1])
Genetic diagnosis
Code List
If genetic diagnosis was established, confirmed by
CL Item
Participant Report  (1)
CL Item
Medical Record  (2)
CL Item
Commerical Testing  (3)
CL Item
Research Testing (4)
Genetic diagnosis
Item
When was genetic diagnosis established?
integer
C0596612 (UMLS CUI [1])
Genetic diagnosis
Item
Where was genetic diagnosis established? Please give name,city and country of clinical laboratory that performed genetic testing
text
C0596612 (UMLS CUI [1])
Genetic diagnosis
Item
Result of genetic testing
text
C0596612 (UMLS CUI [1])
Item
Was patient diagnosed with scoliosis?
integer
C0036439 (UMLS CUI [1])
Scoliosis
Code List
Was patient diagnosed with scoliosis?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Scoliosis
Item
Scoliosis:If yes, please indicate degree of maximum curvature
integer
C0036439 (UMLS CUI [1])
Item
Scoliosis:If yes, please indicate location of maximum curvature
integer
C0036439 (UMLS CUI [1])
Scoliosis
Code List
Scoliosis:If yes, please indicate location of maximum curvature
CL Item
Cervical  (1)
CL Item
Thoracic  (2)
CL Item
Lumbar  (3)
CL Item
Unknown/Not documented (4)
Scoliosis
Item
Scoliosis: If yes, indicate date of last assessment
date
C0036439 (UMLS CUI [1])
Item
Scoliosis:If yes, please indicate if the participant has had surgery
integer
C0036439 (UMLS CUI [1])
Scoliosis
Code List
Scoliosis:If yes, please indicate if the participant has had surgery
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Was participants vision affected?
integer
C1456582 (UMLS CUI [1])
Scoliosis
Code List
Was participants vision affected?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Was participants hearing affected?
integer
C1384666 (UMLS CUI [1])
Scoliosis
Code List
Was participants hearing affected?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Was participants speech affected?
integer
C0233715 (UMLS CUI [1])
Scoliosis
Code List
Was participants speech affected?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Did the participant have foot surgery?
integer
C0188413 (UMLS CUI [1])
Scoliosis
Code List
Did the participant have foot surgery?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Was participants ambulation status affected?
integer
C0080331 (UMLS CUI [1])
Scoliosis
Code List
Was participants ambulation status affected?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does the participant use an assistive walking device?
integer
C3874140 (UMLS CUI [1])
Scoliosis
Code List
Does the participant use an assistive walking device?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Age needing assistive walking device
Item
Assistive walking device: if yes, please indicate age when participant required assistance with walking
integer
C0001779 (UMLS CUI [1,1])
C3874140 (UMLS CUI [1,2])
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