ID

14775

Description

The System Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index for Systemic Lupus Erythematosus is a method that physician investigators use to determine the extent of permanent damage to various body organs or organ systems due to lupus or to the treatment thereof. This method is widely used and allows the physician to determine if a person has had any nonreversible changes (i.e., damage) to organ systems. These changes have occurred since a person is being diagnosed with lupus, are not related to active inflammation, and are ascertained via a clinical assessment. Also, unless stated otherwise, these changes must be present for at least six months prior to the assessment. The SLICC /ACR Damage Index is a cumulative index that records damage that occurs in individuals with lupus, regardless of whether the damage can be definitively attributed to lupus or is due to another cause, such as a comorbid condition. ODM derived from: https://cde.nlm.nih.gov Primary source: https://www.phenxtoolkit.org/ Recent publication: Hendershot, T., Pan, H., Haines, J., Harlan, W.R., Marazita, M.L., McCarty, C.A., Ramos, E.M., and Hamilton, C.M. (2015) Using the PhenX toolkit to add standard measures to a study. Curr. Protoc. Hum. Genet. 86:1.21.1-1.21.17. doi: 10.1002/0471142905.hg0121s86 Permission to publish granted by Carol M. Hamilton.

Link

https://cde.nlm.nih.gov

Keywords

Versions (1)
  1. 4/27/16 4/27/16 -
Uploaded on

April 27, 2016

DOI

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License

Creative Commons BY-NC 3.0
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Systemic Lupus Erythematosus Protocol PhenX Toolkit

English

Systemic Lupus Erythematosus Protocol PhenX Toolkit

1 forms  
PhenX - systemic lupus erythematosus protocol
Description

PhenX - systemic lupus erythematosus protocol

Alias
UMLS CUI-1
C3173924
Ocular (either eye, by clinical assessment) Any cataract ever
Description

cataract ever

Data type

boolean

Alias
UMLS CUI [1]
C0086543
Ocular (either eye, by clinical assessment) Retinal change or optic atrophy
Description

retinal change or optic atrophy

Data type

boolean

Alias
UMLS CUI [1]
C0029124
Neuropsychiatric Cognitive impairment (e.g., memory deficit, difficulty with calculation, poor concentration, difficulty in spoken or written language, impaired performance level) or major psychosis
Description

cognitive impairment

Data type

boolean

Alias
UMLS CUI [1]
C0338656
Neuropsychiatric Cognitive impairment (e.g., memory deficit, difficulty with calculation, poor concentration, difficulty in spoken or written language, impaired performance level) or major psychosis
Description

neuropsychiatric seizures

Data type

boolean

Alias
UMLS CUI [1]
C3259509
Neuropsychiatric Cerebrovascular accident ever (score 2 if > 1)
Description

cerebrovascular accident

Data type

text

Alias
UMLS CUI [1]
C0038454
Neuropsychiatric Cranial or peripheral neuropathy (excluding optic)
Description

cranial or peripheral neuropathy

Data type

boolean

Alias
UMLS CUI [1]
C0031117
UMLS CUI [2]
C0010266
Neuropsychiatric Transverse myelitis
Description

transverse myelitis

Data type

boolean

Alias
UMLS CUI [1]
C0026976
Renal Estimated or measured glomerular filtration rate <50%
Description

glomerular filtration rate

Data type

boolean

Alias
UMLS CUI [1]
C0017654
Renal Proteinuria > = 3.5 gm/24 hours
Description

renal proteinuria

Data type

boolean

Alias
UMLS CUI [1]
C0232883
Renal End-stage renal disease (regardless of dialysis or transplantation)
Description

end-stage renal disease

Data type

boolean

Alias
UMLS CUI [1]
C0022661
Pulmonary hypertension (right ventricular prominence, or loud P2)
Description

pulmonary hypertension

Data type

boolean

Alias
UMLS CUI [1]
C0020542
Pulmonary fibrosis (physical and radiograph)
Description

pulmonary fibrosis

Data type

boolean

Alias
UMLS CUI [1]
C0034069
Pulmonary Shrinking lung (radiograph)
Description

shrinking lung

Data type

boolean

Alias
UMLS CUI [1]
C3258158
Pulmonary Pleural fibrosis (radiograph)
Description

pleural fibrosis

Data type

boolean

Alias
UMLS CUI [1]
C2720436
Pulmonary Pulmonary infarction (radiograph)
Description

pulmonary infarction

Data type

boolean

Alias
UMLS CUI [1]
C0034074
Cardiovascular Angina or coronary artery bypass
Description

angina or coronary artery bypass

Data type

boolean

Alias
UMLS CUI [1]
C0810392
UMLS CUI [2]
C0002962
Cardiovascular Myocardial infarction ever (score 2 if >I)
Description

myocardial infarction

Data type

text

Alias
UMLS CUI [1]
C0027051
Cardiovascular Cardiomyopathy (ventricular dysfunction)
Description

cardiomyopathy

Data type

boolean

Alias
UMLS CUI [1]
C0878544
Cardiovascular Valvular disease (diastolic, murmur, or systolic murmur >3/6)
Description

valvular disease

Data type

boolean

Alias
UMLS CUI [1]
C3258293
Cardiovascular Pericarditis for 6 months, or pericardiectomy
Description

pericarditis

Data type

boolean

Alias
UMLS CUI [1]
C0031046
Peripheral vascular Claudication for 6 months
Description

claudication

Data type

boolean

Alias
UMLS CUI [1]
C1456822
Peripheral vascular Minor tissue loss (pulp space)
Description

minor tissue loss

Data type

boolean

Alias
UMLS CUI [1]
C3257809
Peripheral vascular Significant tissue loss ever (e.g., loss of digit or limb) (score 2 if >1 site)
Description

significant tissue loss

Data type

text

Alias
UMLS CUI [1]
C3258160
Peripheral vascular Venous thrombosis with swelling, ulceration, or venous stasis
Description

venous thrombosis

Data type

boolean

Alias
UMLS CUI [1]
C0042487
Gastrointestinal Infarction or resection of bowel below duodenum, spleen, liver, or gall bladder ever, for cause any (score 2 if > 1)
Description

gastrointestinal infarction

Data type

boolean

Alias
UMLS CUI [1]
C3259590
Gastrointestinal Mesenteric insufficiency
Description

mesenteric insufficiency

Data type

boolean

Alias
UMLS CUI [1]
C3257807
Gastrointestinal Chronic peritonitis
Description

chronic peritonitis

Data type

boolean

Alias
UMLS CUI [1]
C0267763
Gastrointestinal Stricture or upper gastrointestinal tract surgery ever
Description

stricture or upper gastrointestinal tract surgery ever

Data type

boolean

Alias
UMLS CUI [1]
C0399610
Musculoskeletal Muscle atrophy or weakness
Description

muscle atrophy or weakness

Data type

boolean

Alias
UMLS CUI [1]
C0026846
UMLS CUI [2]
C0151786
Musculoskeletal Deforming or erosive arthritis (including reducible deformities, excluding avascular necrosis)
Description

deforming or erosive arthritis

Data type

boolean

Alias
UMLS CUI [1]
C2893905
Musculoskeletal Osteoporosis with fracture or vertebral collapse (excluding avascular necrosis)
Description

osteoporosis with fracture

Data type

boolean

Alias
UMLS CUI [1]
C0521170
Musculoskeletal Avascular necrosis (score 2 if > 1 )
Description

avascular necrosis

Data type

text

Alias
UMLS CUI [1]
C3887513
Musculoskeletal Osteomyelitis
Description

osteomyelitis

Data type

boolean

Alias
UMLS CUI [1]
C0029443
Skin Scarring chronic alopecia
Description

scarring chronic alopecia

Data type

boolean

Alias
UMLS CUI [1]
C3258142
Skin Extensive scarring or panniculum other than scalp and pulp space
Description

skin scarring panniculum

Data type

boolean

Alias
UMLS CUI [1]
C3259601
Skin ulceration (excluding thrombosis) for >6 months
Description

skin ulceration

Data type

boolean

Alias
UMLS CUI [1]
C0037299
Premature gonadal failure
Description

premature gonadal failure

Data type

boolean

Alias
UMLS CUI [1]
C3258052
Diabetes (regardless of treatment)
Description

diabetes

Data type

boolean

Alias
UMLS CUI [1]
C0011849
Malignancy (exclude dysplasia) (score 2 if > 1 site)
Description

malignancy

Data type

boolean

Alias
UMLS CUI [1]
C0006826
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Similar models

Systemic Lupus Erythematosus Protocol PhenX Toolkit

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
PhenX - systemic lupus erythematosus protocol
C3173924 (UMLS CUI-1)
cataract ever
Item
Ocular (either eye, by clinical assessment) Any cataract ever
boolean
C0086543 (UMLS CUI [1])
retinal change or optic atrophy
Item
Ocular (either eye, by clinical assessment) Retinal change or optic atrophy
boolean
C0029124 (UMLS CUI [1])
cognitive impairment
Item
Neuropsychiatric Cognitive impairment (e.g., memory deficit, difficulty with calculation, poor concentration, difficulty in spoken or written language, impaired performance level) or major psychosis
boolean
C0338656 (UMLS CUI [1])
neuropsychiatric seizures
Item
Neuropsychiatric Cognitive impairment (e.g., memory deficit, difficulty with calculation, poor concentration, difficulty in spoken or written language, impaired performance level) or major psychosis
boolean
C3259509 (UMLS CUI [1])
Item
Neuropsychiatric Cerebrovascular accident ever (score 2 if > 1)
text
C0038454 (UMLS CUI [1])
cerebrovascular accident
Code List
Neuropsychiatric Cerebrovascular accident ever (score 2 if > 1)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Yes, more than 1 (Yes, more than 1)
cranial or peripheral neuropathy
Item
Neuropsychiatric Cranial or peripheral neuropathy (excluding optic)
boolean
C0031117 (UMLS CUI [1])
C0010266 (UMLS CUI [2])
transverse myelitis
Item
Neuropsychiatric Transverse myelitis
boolean
C0026976 (UMLS CUI [1])
glomerular filtration rate
Item
Renal Estimated or measured glomerular filtration rate <50%
boolean
C0017654 (UMLS CUI [1])
renal proteinuria
Item
Renal Proteinuria > = 3.5 gm/24 hours
boolean
C0232883 (UMLS CUI [1])
end-stage renal disease
Item
Renal End-stage renal disease (regardless of dialysis or transplantation)
boolean
C0022661 (UMLS CUI [1])
pulmonary hypertension
Item
Pulmonary hypertension (right ventricular prominence, or loud P2)
boolean
C0020542 (UMLS CUI [1])
pulmonary fibrosis
Item
Pulmonary fibrosis (physical and radiograph)
boolean
C0034069 (UMLS CUI [1])
shrinking lung
Item
Pulmonary Shrinking lung (radiograph)
boolean
C3258158 (UMLS CUI [1])
pleural fibrosis
Item
Pulmonary Pleural fibrosis (radiograph)
boolean
C2720436 (UMLS CUI [1])
pulmonary infarction
Item
Pulmonary Pulmonary infarction (radiograph)
boolean
C0034074 (UMLS CUI [1])
angina or coronary artery bypass
Item
Cardiovascular Angina or coronary artery bypass
boolean
C0810392 (UMLS CUI [1])
C0002962 (UMLS CUI [2])
Item
Cardiovascular Myocardial infarction ever (score 2 if >I)
text
C0027051 (UMLS CUI [1])
cerebrovascular accident
Code List
Cardiovascular Myocardial infarction ever (score 2 if >I)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Yes, more than 1 (Yes, more than 1)
cardiomyopathy
Item
Cardiovascular Cardiomyopathy (ventricular dysfunction)
boolean
C0878544 (UMLS CUI [1])
valvular disease
Item
Cardiovascular Valvular disease (diastolic, murmur, or systolic murmur >3/6)
boolean
C3258293 (UMLS CUI [1])
pericarditis
Item
Cardiovascular Pericarditis for 6 months, or pericardiectomy
boolean
C0031046 (UMLS CUI [1])
claudication
Item
Peripheral vascular Claudication for 6 months
boolean
C1456822 (UMLS CUI [1])
minor tissue loss
Item
Peripheral vascular Minor tissue loss (pulp space)
boolean
C3257809 (UMLS CUI [1])
Item
Peripheral vascular Significant tissue loss ever (e.g., loss of digit or limb) (score 2 if >1 site)
text
C3258160 (UMLS CUI [1])
cerebrovascular accident
Code List
Peripheral vascular Significant tissue loss ever (e.g., loss of digit or limb) (score 2 if >1 site)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Yes, more than 1 (Yes, more than 1)
venous thrombosis
Item
Peripheral vascular Venous thrombosis with swelling, ulceration, or venous stasis
boolean
C0042487 (UMLS CUI [1])
gastrointestinal infarction
Item
Gastrointestinal Infarction or resection of bowel below duodenum, spleen, liver, or gall bladder ever, for cause any (score 2 if > 1)
boolean
C3259590 (UMLS CUI [1])
mesenteric insufficiency
Item
Gastrointestinal Mesenteric insufficiency
boolean
C3257807 (UMLS CUI [1])
chronic peritonitis
Item
Gastrointestinal Chronic peritonitis
boolean
C0267763 (UMLS CUI [1])
stricture or upper gastrointestinal tract surgery ever
Item
Gastrointestinal Stricture or upper gastrointestinal tract surgery ever
boolean
C0399610 (UMLS CUI [1])
muscle atrophy or weakness
Item
Musculoskeletal Muscle atrophy or weakness
boolean
C0026846 (UMLS CUI [1])
C0151786 (UMLS CUI [2])
deforming or erosive arthritis
Item
Musculoskeletal Deforming or erosive arthritis (including reducible deformities, excluding avascular necrosis)
boolean
C2893905 (UMLS CUI [1])
osteoporosis with fracture
Item
Musculoskeletal Osteoporosis with fracture or vertebral collapse (excluding avascular necrosis)
boolean
C0521170 (UMLS CUI [1])
Item
Musculoskeletal Avascular necrosis (score 2 if > 1 )
text
C3887513 (UMLS CUI [1])
cerebrovascular accident
Code List
Musculoskeletal Avascular necrosis (score 2 if > 1 )
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Yes, more than 1 (Yes, more than 1)
osteomyelitis
Item
Musculoskeletal Osteomyelitis
boolean
C0029443 (UMLS CUI [1])
scarring chronic alopecia
Item
Skin Scarring chronic alopecia
boolean
C3258142 (UMLS CUI [1])
skin scarring panniculum
Item
Skin Extensive scarring or panniculum other than scalp and pulp space
boolean
C3259601 (UMLS CUI [1])
skin ulceration
Item
Skin ulceration (excluding thrombosis) for >6 months
boolean
C0037299 (UMLS CUI [1])
premature gonadal failure
Item
Premature gonadal failure
boolean
C3258052 (UMLS CUI [1])
diabetes
Item
Diabetes (regardless of treatment)
boolean
C0011849 (UMLS CUI [1])
malignancy
Item
Malignancy (exclude dysplasia) (score 2 if > 1 site)
boolean
C0006826 (UMLS CUI [1])
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