CDE Detailed Report
Subdomain Name: The International SCI Data Sets
CRF: welcome
Displaying 1 - 16 of 16
| CDE ID | CDE Name | Variable Name | Definition | Short Description | Question Text | Permissible Values | Description | Data Type | Disease Specific Instructions | Disease Specific Reference | Population | Classification (e.g., Core) | Version Number | Version Date | CRF Name (CRF Module / Guidance) | Subdomain Name | Domain Name | Size | Input Restrictions | Min Value | Max Value | Measurement Type | External Id Loinc | External Id Snomed | External Id caDSR | External Id CDISC |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C06063 | Pain onset date | PainOnstDate | Date (and time, if applicable and known) the particular pain problem started | 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.). |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Free-Form Entry |
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| C02411 | Laterality type | LatTyp | Laterality type relative to the anatomic site of the body examined or affected | Laterality type relative to the anatomic site of the body examined or affected | Pain locations sites | Left;Right;Midline | Left;Right;Midline | 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 | 3.00 | 2013-08-28 16:08:00.453 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| C06070 | Pain interfere daily activity scale | PainIntrferDlyActScale | Scale that evaluates to what extent pain has interfered with the participant's daily activities | Scale that evaluates to what extent pain has interfered with the participant's daily activitie | In general how much has pain interfered with your day to day activities in the last week? | 1;10;2;3;4;5;6;7;8;9 | 1;10;2;3;4;5;6;7;8;9 | Numeric Values |
Choose one for each pain classification (e.g., worst pain, second worst pain, 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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| C06000 | Site identifier number | SiteIDNum | Unique identification number given to the study site to distinguish the location where data is recorded | Unique identification number given to the study site to distinguish the location where data is recorde | Site | Alphanumeric |
The site identifiers or IDs should be assigned by the study. |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets | 255 |
Free-Form Entry |
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| C06071 | Pain interfere mood scale | PainIntrferMoodScl | Scale that evaluates to what extent pain has interfered with the participants mood | Scale that evaluates to what extent pain has interfered with the participants moo | In general how much has pain interfered with your overall mood in the past week? | 1;10;2;3;4;5;6;7;8;9 | 1;10;2;3;4;5;6;7;8;9 | Numeric Values |
Choose one for each pain classification (e.g., worst pain, second worst pain, 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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| 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 (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performe | 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.). |
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 | 3.00 | 2013-07-24 21:00:23.88 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Free-Form Entry |
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| C06072 | Pain interfere sleep scale | PainIntrferSleepScale | Scale that evaluates to what extent pain has interfered with the participant's sleep | Scale that evaluates to what extent pain has interfered with the participant's slee | In general how much has pain interfered with your ability to get a good night's sleep? | 1;10;2;3;4;5;6;7;8;9 | 1;10;2;3;4;5;6;7;8;9 | Numeric Values |
Choose one for each pain classification (e.g., worst pain, second worst pain, 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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| C06056 | Pain past seven day indicator | PainPstSvnDyInd | Indicator of the presence of any type of pain during the last 7 days, including today | Indicator of the presence of any type of pain during the last 7 days, including toda | 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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| C06073 | Pain treatment indicator | PainTreatmtInd | Indicator for whether the participant is using or receiving any treatment for the pain experienced | Indicator for whether the participant is using or receiving any treatment for the pain experience | 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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| 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 | 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 characte | 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. |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| C19247 | Subject ID | SubIDNam | Subject identification ID | Subject identification ID | Subject | Alphanumeric |
The participant or subject identifiers or IDs should be assigned by the study. |
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 | 1.00 | 2014-06-05 13:10:49.0 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets | 255 |
Free-Form Entry |
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| 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 | 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 proble | 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. |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets | 255 |
Free-Form Entry |
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| C06059 | Pain location anatomic site | PainLocAntmicSite | Anatomic site on the body where the pain is experienced | 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 |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| C06060 | Pain location indicator | PainTypLatLoc | Indicates if the participant experienced pain in the particular location described jointly by the laterality and anatomic site | 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 |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
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| 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 present. Eight broad types of pain are specified based on the new SCI pain taxonomy that has been published and validated | Type of Pain | Neuropathic- At-level SCI;Neuropathic- Below-level SCI;Neuropathic- Other;Nociceptive-musculoskeletal;Nociceptive-other;Nociceptive-visceral;Other pain type;Unknown | Neuropathic- At-level SCI;Neuropathic- Below-level SCI;Neuropathic- Other;Nociceptive-musculoskeletal;Nociceptive-other;Nociceptive-visceral;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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Multiple Pre-Defined Values Selected |
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| 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 | 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. |
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 | 3.00 | 2013-07-17 09:26:36.973 | International SCI Pain Basic Data Set Version 2.0 | The International SCI Data Sets | The International SCI Data Sets |
Single Pre-Defined Value Selected |
