ID

14875

Description

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/

Keywords

Versions (1)
  1. 5/3/16 5/3/16 -
Uploaded on

May 3, 2016

DOI

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License

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

English

Medical History of Friedreich´s Ataxia

1 forms  
Special medical history
Description

Special medical history

Study ID
Description

Study ID

Data type

text

Alias
UMLS CUI [1]
C2826693
Study site name
Description

Study site

Data type

text

Alias
UMLS CUI [1]
C2825164
Subject ID
Description

Subject ID

Data type

text

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

Age at Onset

Data type

integer

Measurement units
  • yrs
Alias
UMLS CUI [1]
C0150907
yrs
Age of diagnosis
Description

Age of diagnosis

Data type

integer

Measurement units
  • yrs
Alias
UMLS CUI [1]
C1828181
yrs
First symptom experienced by the patient
Description

First symptoms

Data type

integer

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

First symptoms

Data type

text

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

Problems during neonatal period

Data type

boolean

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

Problems during neonatal period

Data type

text

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

Impaired physical abilities

Data type

boolean

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

Motor delay

Data type

boolean

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

Motor delay

Data type

text

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

Genetic diagnosis

Data type

boolean

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

Select all that apply

Data type

integer

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

YYYY

Data type

integer

Measurement units
  • 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
Description

Genetic diagnosis

Data type

text

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

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)

Data type

text

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

Scoliosis

Data type

integer

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

Scoliosis

Data type

integer

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

Scoliosis

Data type

integer

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

Scoliosis

Data type

date

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

Scoliosis

Data type

integer

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

Vision impairment

Data type

integer

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

Hearing impairment

Data type

integer

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

Speech impairment

Data type

integer

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

Foot surgery

Data type

integer

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

Ambulation

Data type

integer

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

Assistive walking device

Data type

integer

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

Age needing assistive walking device

Data type

integer

Measurement units
  • 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 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
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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