Version 2.78

Status Information

Status
TRIAL

Term Description

The System Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ARC) 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 /ARC 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. Prior to completing this protocol, the PhenX Skin, Bone, Muscle and Joint Working Group (WG) notes that investigators must first confirm the presence of lupus in respondents. This can be done via the PhenX measure Autoimmune Diseases Related to Type 1 Diabetes. This measure uses one question to determine the presence of various autoimmune diseases (including lupus) in respondents or their children.
Source: Regenstrief LOINC

Reference Information

Type Source Reference
Article Consensus measures for Phenotypes and Exposures Gladman, D., Ginzler, E., Goldsmith, C., Fortin, P., Liang, M., Urowitz, M., Bacon, P., Bombardieri, S., Hanly, J., Hay, E., Isenberg, D., Jones, J., Kalunian, K., Maddison, P., Nived, O., Petri, M., Richter, M., Sanchez-Guerrero, J., Snaith, M., Sturfelt, G., Symmons, D., & Zoma, A. (1996). The Development and Initial Validation of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index for Systemic Lupus Erythematosus Arthritis & Rheumatism, 39(3), 363-369.399
Article Consensus measures for Phenotypes and Exposures Alarcon, G. S., Roseman, J. M., McGwin, G., Jr., Uribe, A., Bastian, H. M., Fessler, B. J., Baethge, B. A., Friedman, A. W., & Reveille, J. D.; the LUMINA Study Group. (2004). Systemic lupus erythmatosis in three ethnic groups. XX. Damage as a predictor of further damage. Rheumatology, 43, 202-205.
Article Consensus measures for Phenotypes and Exposures Danila, M. I., Pons-Estel, G. J. Zhang, J., Vila, L. M., Reveille, J. D., & Alarcon, G. S. (2009). Renal damage is the most important predictor of mortality within the damage index: data from LUMINA LXIV, a multiethnic US cohort Rheumatology, 48, 542-545.
Citation Consensus measures for Phenotypes and Exposures Lupus in Minorities: Nature versus Nurture (LUMINA) study glossary. Available by contacting one of the study investigators, Dr. Graciela S. Alarcon or Dr. John Reveille.

Panel Hierarchy

Details for each LOINC in Panel LHC-Forms

LOINC Name R/O/C Cardinality Example UCUM Units
64392-4 PhenX - systemic lupus erythematosus protocol 171001
Indent66608-1 Ocular (either eye, by clinical assessment) Any cataract ever
Indent66609-9 Ocular (either eye, by clinical assessment) Retinal change or optic atrophy
Indent66610-7 Neuropsychiatric Cognitive impairment (e.g., memory deficit, difficulty with calculation, poor concentration, difficulty in spoken or written language, impaired performance level) or major psychosis
Indent66611-5 Neuropsychiatric Cognitive impairment (e.g., memory deficit, difficulty with calculation, poor concentration, difficulty in spoken or written language, impaired performance level) or major psychosis
Indent66612-3 Neuropsychiatric Cerebrovascular accident ever (score 2 if > 1)
Indent66613-1 Neuropsychiatric Cranial or peripheral neuropathy (excluding optic)
Indent66614-9 Neuropsychiatric Transverse myelitis
Indent66615-6 Renal Estimated or measured glomerular filtration rate <50%
Indent66616-4 Renal Proteinuria > = 3.5 gm/24 hours
Indent66617-2 Renal End-stage renal disease (regardless of dialysis or transplantation)
Indent66618-0 Pulmonary Pulmonary hypertension (right ventricular prominence, or loud P2)
Indent66619-8 Pulmonary Pulmonary fibrosis (physical and radiograph)
Indent66620-6 Pulmonary Shrinking lung (radiograph)
Indent66621-4 Pulmonary Pleural fibrosis (radiograph)
Indent66622-2 Pulmonary Pulmonary infarction (radiograph)
Indent66623-0 Cardiovascular Angina or coronary artery bypass
Indent66624-8 Cardiovascular Myocardial infarction ever (score 2 if >I)
Indent66625-5 Cardiovascular Cardiomyopathy (ventricular dysfunction)
Indent66626-3 Cardiovascular Valvular disease (diastolic, murmur, or systolic murmur >3/6)
Indent66627-1 Cardiovascular Pericarditis for 6 months, or pericardiectomy
Indent66628-9 Peripheral vascular Claudication for 6 months
Indent66662-8 Peripheral vascular Minor tissue loss (pulp space)
Indent66663-6 Peripheral vascular Significant tissue loss ever (e.g., loss of digit or limb) (score 2 if >1 site)
Indent66664-4 Peripheral vascular Venous thrombosis with swelling, ulceration, or venous stasis
Indent66665-1 Gastrointestinal Infarction or resection of bowel below duodenum, spleen, liver, or gall bladder ever, for cause any (score 2 if > 1)
Indent66666-9 Gastrointestinal Mesenteric insufficiency
Indent66667-7 Gastrointestinal Chronic peritonitis
Indent66668-5 Gastrointestinal Stricture or upper gastrointestinal tract surgery ever
Indent66669-3 Musculoskeletal Muscle atrophy or weakness
Indent66670-1 Musculoskeletal Deforming or erosive arthritis (including reducible deformities, excluding avascular necrosis)
Indent66671-9 Musculoskeletal Osteoporosis with fracture or vertebral collapse (excluding avascular necrosis)
Indent66672-7 Musculoskeletal Avascular necrosis (score 2 if > 1 )
Indent66673-5 Musculoskeletal Osteomyelitis
Indent66674-3 Skin Scarring chronic alopecia
Indent66675-0 Skin Extensive scarring or panniculum other than scalp and pulp space
Indent66676-8 Skin Skin ulceration (excluding thrombosis) for >6 months
Indent66677-6 Premature gonadal failure
Indent66678-4 Diabetes (regardless of treatment)
Indent66679-2 Malignancy (exclude dysplasia) (score 2 if > 1 site)

Fully-Specified Name

Component
PhenX - systemic lupus erythematosus protocol 171001
Property
-
Time
Pt
System
^Patient
Scale
-
Method
PhenX

Additional Names

Short Name
Lupus SLE proto

Survey Question

Source
PX171001

Basic Attributes

Class
PANEL.PHENX
Type
Clinical
First Released
Version 2.36
Last Updated
Version 2.66
Change Reason
Updated the PhenX ID from "PhenX.<ID>" to "PX<ID>" in Survey Question Source field to align with the variable identifier used in the PhenX Toolkit.; Added the PhenX protocol ID to the Component to clearly define the protocol version for which this panel is based upon.; Added the PhenX protocol ID to the Component to clearly define the protocol version for which this panel is based upon.
Panel Type
Panel

Member of these Panels

LOINC Long Common Name
62896-6 PhenX domain - Skin, bone, muscle and joint

Language Variants Get Info

Tag Language Translation
es-MX Spanish (Mexico) PhenX - protocolo de lupus eritematoso sistémico 171001:-:Punto temporal:^ Paciente:-:PhenX
it-IT Italian (Italy) PhenX - lupus eritematoso sistemico, protocollo:-:Pt:^Paziente:-:PhenX
Synonyms: Panel PhenX paziente PhenX Punto nel tempo (episodio)
ru-RU Russian (Russian Federation) PhenX - системная красная волчанка протокол:-:ТчкВрм:^Пациент:-:PhenX
Synonyms: Точка во времени;Момент
zh-CN Chinese (China) PhenX - 系统性红斑狼疮方案 171001:-:时间点:^患者:-:PhenX
Synonyms: Consensus measures for Phenotypes and eXposures;PhenX;暴露;接触;表型与暴露共识指标;表现型与暴露共识指标;表型与暴露公认指标 Consensus measures for Phenotypes and eXposures;表型与暴露共识指标;表现型与暴露共识指标;表型与暴露公认指标 PhenX - 全身性红斑狼疮方案 171001;Consensus measures for Phenotypes and eXposures;PhenX;暴露;接触;表型与暴露共识指标;表现型与暴露共识指标;表型与暴露公认指标;systemic lupus erythematosus;SLE;系统性红斑狼疮;全身性红斑狼疮 医嘱套餐 医嘱套餐类 医嘱套餐组 医嘱组 医嘱组.PhenX;组套（组合、医嘱组、套餐、套餐医嘱、医嘱套餐、组合申请、组合项目）.PhenX;Consensus measures for Phenotypes and eXposures;PhenX;表型与暴露共识指标;表现型与暴露共识指标;表型与暴露公认指标;PhenX 医嘱组 医嘱组合 医嘱组合类 医嘱组套 医嘱组套类 医嘱组类 医疗服务对象;客户;病人;病患;病号;超系统 - 病人 多重;多重型;多重标尺类型;多重精度类型 套餐 套餐医嘱 套餐医嘱组 套餐医嘱组类 实验室医嘱套餐 实验室医嘱套餐类 实验室医嘱组 实验室医嘱组合类 实验室医嘱组套 实验室医嘱组套类 实验室套餐医嘱组 实验室套餐医嘱组类 实验室检验项目医嘱组合类 实验室检验项目组合类 时刻;随机;随意;瞬间 检验医嘱组合类 检验项目医嘱组合类 检验项目组合类 组 组合 组合医嘱 组合类 组套

LOINC Terminology Service (API) using HL7® FHIR® Get Info

CodeSystem lookup
https://fhir.loinc.org/CodeSystem/$lookup?system=http://loinc.org&code=64392-4
Questionnaire definition
https://fhir.loinc.org/Questionnaire/?url=http://loinc.org/q/64392-4