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CDE Detailed Report
This report contains detailed information about the selected CDEs.
Note: If at least one CDE was selected from a copyright- or trademark-protected instrument/scale then all of the CDEs from that instrument/scale are included in this report.
Disease: Spinal Cord Injury
SubDisease: Spinal Cord Injury
Sub-Domain: The International SCI Data Sets
CRF: International SCI Pain Basic Data Set Version 2.0
Item count: 16 (16 distinct CDEs)
CDE ID
CDE Name
Variable Name
Definition / Description
Question Text
Permissible Value
Description
Data Type
Instructions
References
Population
Classification (e.g., Core)
Version #
Version Date
Aliases for Variable Name
CRF Module / Guideline
© or TM
Sub-Domain
Domain
Previous Title
Size
Input Restrictions
Min Value
Max Value
Measurement Type
LOINC ID
SNOMED
caDSR ID
CDISC ID
C06000
Site identifier number
SiteIDNum
Unique identification number given to the study site to distinguish the location where data is recorded.
Site
  
Alphanumeric
The site identifiers or IDs should be assigned by the study.
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
SITE
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Site identifier
255
Free-Form Entry
       
C19247
Subject ID
SubIDNam
Subject identification ID
Subject
  
Alphanumeric
The participant or subject identifiers or IDs should be assigned by the study.
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult;Pediatric
Supplemental–Highly Recommended
1.0
6/5/2014
Aliases for variable name not defined
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
255
Free-Form Entry
       
C06005
Data collected date and time
DataCollDateTime
Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed.
Date of data collection
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult;Pediatric
Supplemental–Highly Recommended
3.0
7/24/2013
Aliases for variable name not defined
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Data collected date and time
 
Free-Form Entry
       
C06056
Pain past seven day indicator
PainPstSvnDyInd
Indicator of the presence of any type of pain during the last 7 days, including today.
Have you had any pain during the last seven days including today?
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
Choose one. Pain is defined by the International Association for the Study of Pain (IASP) as "An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage" (Merskey & Bogduk, 1994). The seven day interval was chosen in order to be able to capture current pain and both constant and intermittent chronic pain that may be clinically relevant and to have the same time frame in all data sets.

Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23. Merskey H, Bogduk N. (Eds.). (1994). Classification of chronic pain: Description of chronic pain syndromes and definition of pain terms. Seattle: IASP Press.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PAIN7D
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain past seven days indicator
 
Single Pre-Defined Value Selected
       
C06057
Pain different problem number
PainDiffrntProbNum
Number of different pain problems an individual perceives that he or she has experienced during the last seven days including today. A "pain problem" is defined by the person himself as a pain that has a specific character.
If yes how many different pain problems did you have? Please note that the time period during the last week applies to all pain interference questions.
1;2;3;4;5 or more;
1;2;3;4;5 or more;
Alphanumeric
Only answered if person reports pain during the last seven days. Please note that one pain problem can be located in one or several areas.
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNPROBNO
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain different problems number
 
Single Pre-Defined Value Selected
       
C06058
Pain problem grade
PainProbGrade
Grade for the pain problem that indicates whether the person is describing their worst pain problem, their second worst pain problem, or their third worst pain problem.
Please describe your three worst pain problems
  
Alphanumeric
All three classifications should be used if the person reports three or more pain problems in the last 7 days.
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNPROB
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain problem grade
255
Free-Form Entry
       
C02411
Laterality type
LatTyp
Laterality type relative to the anatomic site of the body examined or affected
Pain locations sites
Right;Midline;Left;
Right;Midline;Left;
Alphanumeric
Choose one
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Laterality type
 
Single Pre-Defined Value Selected
       
C06059
Pain location anatomic site
PainLocAntmicSite
Anatomic site on the body where the pain is experienced
Pain locations sites
Head;Throat;Neck;Shoulder;Upper arm;Elbow;Forearm;Wrist;Hand/Fingers;Chest;Abdomen;Pelvis/Genitalia;Upper back;Lower back;Buttocks;Hip;Anus;Upper leg/Thigh;Knee;Shin;Calf;Ankle;Foot/Toes;
Head;Throat;Neck;Shoulder;Upper arm;Elbow;Forearm;Wrist;Hand/Fingers;Chest;Abdomen;Pelvis/Genitalia;Upper back;Lower back;Buttocks;Hip;Anus;Upper leg/Thigh;Knee;Shin;Calf;Ankle;Foot/Toes;
Alphanumeric
Can be more than one, so check all that apply
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain location anatomic site
 
Single Pre-Defined Value Selected
       
C06060
Pain location indicator
PainTypLatLoc
Indicates if the participant experienced pain in the particular location described jointly by the laterality and anatomic site
Pain locations sites
Right;Midline;Left;
Right;Midline;Left;
Alphanumeric
Can be more than one, so check all that apply
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain location indicator
 
Single Pre-Defined Value Selected
       
C06061
Pain type
PainTyp
Type of pain present. Eight broad types of pain are specified based on the new SCI pain taxonomy that has been published and validated (Bryce TN, Biering-Sorensen F, Finnerup NB, Cardenas DD, Defrin R, Lundeberg T et al.
International spinal cord injury pain (ISCIP) classification: part I. Background and description. Spinal Cord 2012; 50: 413–417. and Bryce TN, Biering-Sorensen F, Finnerup NB, Cardenas DD, Defrin R, Ivan E et al.
International spinal cord injury pain (ISCIP) classification: part 2. Initial validation using vignettes. Spinal Cord 2012; 50: 404–412.).
Type of Pain
Nociceptive-musculoskeletal;Nociceptive-visceral;Nociceptive-other;Neuropathic- At-level SCI;Neuropathic- Below-level SCI;Neuropathic- Other;Other pain type;Unknown;
Nociceptive-musculoskeletal;Nociceptive-visceral;Nociceptive-other;Neuropathic- At-level SCI;Neuropathic- Below-level SCI;Neuropathic- Other;Other pain type (not nociceptive or neuropathic);Unknown;
Alphanumeric
Check all that apply. Seven broad types of pain are specified based on pain types identified in previous SCI pain taxonomies (Donovan et al., 1982; Siddall et al., 2000; Bryce & Ragnarsson, 2001; Cardenas et al., 2002; Bryce et al., 2012a,b) and based on prevalence in the SCI population. Please note that the ASIA Impairment scale (AIS) and the associated dermatomal map (Kirshblum et al., 2011) are to be used as integral parts of the SCI pain classification. Nociceptive pains that are less prevalent or not directly related to SCI and not categorized as musculoskeletal or visceral can be classified as ‘Other (Nociceptive)’. Pains that are not associated with a lesion or disease affecting the spinal cord or nerve roots yet are nevertheless neuropathic can be classified as ‘Other (Neuropathic)’. ‘Unknown’ should be used when it is not possible to classify the pain into one of the categories listed above. ‘Unknown’ pain refers only to pain of unknown etiology and not to pains with both nociceptive and neuropathic qualities, nor to defined pain syndromes of unknown etiology, like fibromyalgia. For pains that seem to have both nociceptive and neuropathic qualities the two components should be classified separately. Defined pain syndromes of unknown etiology (for example, fibromyalgia) should be coded as ‘Other’
Bryce TN, Ragnarsson KT. Epidemiology and classification of pain after spinal cord injury. Top Spinal Cord Inj Rehabil. 2001;7:1-17. Cardenas DA, Turner JA, Warms CA, Marshall HM. Classification of chronic pain associated with spinal cord injuries. Arch Phys Med Rehabil. 2002;83:1708-14.Donovan WH, Dimitrijevic MR, Dahm L, Dimitrijevic M. Neurophysiological approaches to chronic pain following spinal cord injury. Paraplegia. 1982;20:135-46. Siddall PJ, Yezierski RP, Loeser JD. Pain following spinal cord injury: clinical features, prevalence, and taxonomy. International Association for the Study of Pain Newsletter. 2000;3:3-7. Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain type
 
Multiple Pre-Defined Values Selected
       
C06062
Pain intensity average past week scale
PainIntnstAvgPstWkScale
Scale of the participant's/subject's pain intensity in the past week. A 0 – 10 Numerical Rating Scale (ranging from 0 = "No pain" to a maximum of 10 = "Pain as bad as you can imagine") of average pain intensity for the past week
Average pain intensity in the last week
0;1;2;3;4;5;6;7;8;9;10;
No Pain;;;;;;;;;;pain as bad as you can imagine;
Numeric Values
Choose one. Please note that "last week" specifically refers to the last seven days including today.
Supplemental - Highly Recommended
Bryce TN, Budh CN, Cardenas DD, Dijkers M, Felix ER, Finnerup NB, Kennedy P, Lundeberg T, Richards JS, Rintala DH, Siddall P, Widerstrom-Noga E. Pain after spinal cord injury: an evidence-based review for clinical practice and research. Report of the National Institute on Disability and Rehabilitation Research Spinal Cord Injury Measures meeting. J Spinal Cord Med. 2007;30:421-40. Dworkin RH, Turk DC, Farrar JT, Haythornthwaite JA, Jensen MP, Katz NP, Kerns RD, Stucki G, Allan RR, Bellamy N, Carr DB, Chandler J, Cowan P, Dionne R, Galer BS, Hertz S, Jadad AR, Kramer LD, Manning DC, Martin S, McCormick CG, McDermott, MP, McGrath P, Quessy S, Rappaport BA, Robbins W, Robinson JP, Rothman M, Royal MA, Simon L, Stauffer JW, Stein W, Tollett J, Wernicke J, Witter J. Core outcome measures for chronic pain clinical trials: IMMPACT recommendations. Pain. 2005;113:9-19. Jensen MP, Karoly P. (2001). Self-report scales and procedures for assessing pain in adults. In DC Turk & R Melzack (Eds.), Handbook of pain assessment, 2nd edition. New York: Guilford Publications, pp. 15-34. Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNINTNST
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain intensity average past week scale
 
Single Pre-Defined Value Selected
       
C06063
Pain onset date
PainOnstDate
Date (and time, if applicable and known) the particular pain problem started
Date of onset for pain
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNONSTDT
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain onset date and time
 
Free-Form Entry
       
C06070
Pain interfere daily activity scale
PainIntrferDlyActScale
Scale that evaluates to what extent pain has interfered with the participant's daily activities.
In general how much has pain interfered with your day to day activities in the last week?
1;2;3;4;5;6;7;8;9;10;
1;2;3;4;5;6;7;8;9;10;
Numeric Values
Choose one for each pain classification (e.g., worst pain, second worst pain, etc.)
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNDAYACT
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain interfering with day to day activities scale
 
Single Pre-Defined Value Selected
       
C06071
Pain interfere mood scale
PainIntrferMoodScl
Scale that evaluates to what extent pain has interfered with the participants mood.
In general how much has pain interfered with your overall mood in the past week?
1;2;3;4;5;6;7;8;9;10;
1;2;3;4;5;6;7;8;9;10;
Numeric Values
Choose one for each pain classification (e.g., worst pain, second worst pain, etc.)
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNMOOD
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain interfering with mood scale
 
Single Pre-Defined Value Selected
       
C06072
Pain interfere sleep scale
PainIntrferSleepScale
Scale that evaluates to what extent pain has interfered with the participant's sleep.
In general how much has pain interfered with your ability to get a good night's sleep?
1;2;3;4;5;6;7;8;9;10;
1;2;3;4;5;6;7;8;9;10;
Numeric Values
Choose one for each pain classification (e.g., worst pain, second worst pain, etc.)
Supplemental - Highly Recommended
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNSLEEP
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain interfering with sleep scale
 
Single Pre-Defined Value Selected
       
C06073
Pain treatment indicator
PainTreatmtInd
Indicator for whether the participant is using or receiving any treatment for the pain experienced.
Are you using or receiving any Treatment for your pain problem?
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
By "treatment" is meant any prescribed or non-prescribed medical, surgical, psychological, or physical treatment that the patient is using or receiving for pain that has been present the last seven days to alleviate his/her pain/pains. This variable may include chronic and intermittent drug treatment, physical therapy, relaxation training, nerve blocks etc.
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Adult
Supplemental–Highly Recommended
3.0
7/17/2013
PNTX
International SCI Pain Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pain treatment indicator
 
Single Pre-Defined Value Selected
       
12-19-2018
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